Excessive wiping after urination claims she cannot get dry enough...

My daughter has issues with tags, socks her shoes need to be a certain way, etc. Now for 6 months after she goes to the bathroom she claims she cannot get dry enough. She had been tested numerous times for urinary and bladder infection, there is none.




She can be in the bathroom for 10 minutes wiping and trust me she is dry but says she still feels wet. The urologist sees nothing urological wrong with her and I am at my wits end!! Does anyone else deal with this?



Comments for Excessive wiping after urination claims she cannot get dry enough...

Average Rating starstarstarstarstar

Click here to add your own comments

Apr 25, 2024
Rating
starstarstarstarstar 		12 rolls of toilet paper later!
by: Anonymous

OMG! Thank you all for posting! I am ordering graviola straight away. We have tried everything for over a decade & I have NEVER heard of PANDAS. I have been in and out of hospitals, we have seen doctors, specialists, PA’s, counselors, psychologists and hundreds & thousands of dollars later, I find you all.

I’ve given up on conventional medicine. Unless it’s a real emergency, I will only be going once a year for check ups for me & my kids. I cannot begin to tell you the non-sense and botch jobs and wrong dosages & almost killing 2 of my kids ( but, oh we saved them!) If I hadn’t taken them we wouldn’t have had that experience to begin with.

Anyway- I’m done with the healthcare system. None of them know what the term" food is your medicine " means or where it comes from . I’m not interested in their pill popping party. And they don’t even know where the hypocratic oath originated & many do not even take the oath any longer. Now that I know, thank you all, I will be ordering herbs that I know will heal her.

And I am so sorry for EVERY ONE OF YOU WHO HAVE GONE THROUGH THIS HELL! And all of the doctors & health care professionals who have made you think you’re crazy or your child or that it’s the parents fault. I’m so sick of it!

HERBS HEAL HUMANS :LEARN WHAT THEY ARE💕
Feb 08, 2024
Rating
starstarstarstarstar 		Wetness
by: Julie

Hi everyone,

I'm so sorry to hear you are going through this. We have been going through this since my daughter was 4 year olds and she is 7 years old now.

We found a doctor who is aware and believes in PANS (and PANDAS) and they her a short course of antibiotics and it worked. Unfortunately, the journey hasn't been as smooth since but at least it helped us confirm it's PANS.

There are Facebook groups with other parents going through the same. I highly recommend joining. There is a lot of information and some cases are really severe and not necessarily relevant for your child. It's helpful for finding doctors in your area though and having a support group knowing you are not alone.

From a parent who understands the stress of this horrible condition ❤
Julie
Feb 08, 2024
Rating
starstarstarstarstar 		Answer to the last post
by: Anonymous

My daughter had this issue for 11 months it was devastating she developed these horrible symptoms after a strep infection and later diagnosed with PANDAS, we are in Colorado, what helped her was antibiotics and IVIG, please check aspire website to look for providers directory
Feb 07, 2024
Rating
starstarstarstarstar 		What on earth is going on?
by: Help needed in Buffalo

My 8 year old is going through this too! She feels wet and/or dirty all the time, and this crazy toileting situation came out of the blue. It started at the end of December, and has taken over our family life. The poor thing wipes a billion times. No amount of wiping with TP or a towel is enough.

How can we be sure if it is a nuance of SPD or OCD, (and does it matter if the treatment (Zoloft and CBT seems to be about the same recommendation)? What if they get it wrong? And, how long after having strep could a blood test indicate PANDAS- she was sick in November and it is now February?!

We are all a mess. I cannot even remember what life was like before this, and cannot imagine it continuing on this way. I am so sad for my child.
Dec 19, 2023
Rating
starstarstarstarstar 		Desperate
by: Anonymous

We are so desperate, our DD 7 years old is been complaining about her pee not feeling dry and she keeps saying it feels wet, she also have se sensory issues, socks, cloths shoes. Meltdowns after school, go did you treat it, what works for you?
Aug 14, 2023
Rating
starstarstarstarstar 		Healing with Homeopathy
by: Anonymous

I am here to offer advice as we are going through this with our 5 year old daughter. She had strep a few months ago and began to display a lot of PANDAS symptoms such as OCD (feeling wet, having to check her underwear several times), emotional irritability, and noise sensitivity. We have since started her on homeopathy and have witnessed amazing healing. Please don't go the conventional route with antibiotics and anti-depressants! Seek out a classical homeopath and you will see amazing results! I highly recommend Resilience Naturopathic!
Aug 12, 2023
Rating
starstarstarstarstar 		Excessive drying after weeing
by: Anonymous

My daughter is the same . She nearly blocks the toilet after having a wee as she uses such much toiket paper. Pulls her pants up then pulls them off in rage as she says she is still wet. Not easy especially when you’re in a rush but it’s just how the SPD affects her.
Apr 18, 2023
Rating
starstarstarstarstar 		Any updates
by: Anonymous

I’m wondering how everyone is doing and if you have any update, hope many of you were able to find solutions to help your little one, my daughter 6 years old is doing better after 4 months, finally we found a PANDAS Doctor in Colorado.
Apr 07, 2023
Rating
starstarstarstarstar 		Overwiping - Hours in Bathroom - Check For Pinworm
by: Anonymous

My daughter had the same issue - excessive wiping, in the bathroom all the time, couldn't get dry. Tested for lyme, pans and pandas - all negative. Turns out she had pinworms, which are extremely common and usually undiagnosed for 9 plus years. Within 48 hours of the pinworm treatment, we had our daughter back. Pinworm infestations can actually cause havoc on the nervous system, prevent sleep and cause all sorts of issues. If you're having the over-wiping/can't get dry/underware not comfortable issue - test for pinworms. The treatment is actually over the counter. With our daughter - we were actually able to see them in her bm's. Hope this helps someone. We went through 9 months of heck.
Mar 06, 2023
Rating
starstarstarstarstar 		Homeopathy Helps!
by: Anonymous

There is a wonderful team that specializes in homeopathy for PANS/PANDAS called Resilience Naturopathic https://resiliencenaturopathic.com/
They’re based in San Diego but they offer virtual
appointments. We are in Canada, and my daughter was a patient for a couple years. It helped her immensely! Worth looking into. Check out their Facebook Group as well (Homeopathy for PANS and PANDAS)
Mar 02, 2023
Rating
starstarstarstarstar 		Pandas
by: Anonymous

Someone recommended a naturopath/homeopath to me named Dr. Angelica Lemke. She does visits via video call so you don’t have to go in. I haven’t actually seen her just passing along the recommendation. She is familiar with PANDAS. I was also told to go to a chiropractor and look into "primitive reflexes" and "primitive reflex integration".
Mar 02, 2023
Rating
starstarstarstarstar 		Pans
by: Julie

I'm so sorry to hear that your daughter is going this too. Antibiotics worked for my daughter the first time round. The second time it took longer and also another type of Antibiotics.

I suggest you join some Facebook groups where pandas parents discuss this. There is a group called PANDAS Parents.

Also try and find a doctor is understands and believes in PANDAS. You should be able to ask the Facebook group above if you're unsure. Where are you based?

My daughter is also 6 and we have drastically cut out gluten, dairy and sugar from her diet since these tend to be foods that cause inflammation. I don't know for sure whether that has helped but we will be continuing with it
Mar 02, 2023
Rating
starstarstarstarstar 		Please, I need some hope!!
by: Anonymous

My daughter is 6yo and she complains about the same thing, a feeling of wetness, she cries desperately, her Doctor referred her o a psychologist and when I mention PANDAS she laughed at me, I need someone to advise me or give me some hope
Jan 06, 2023
Rating
starstarstarstarstar 		Perpetual wetness
by: Anonymous

My eight year old grandchild continues to struggle with this. It started around 4 and has gotten progressively worse. It can be up to an hour in the b/r and a whole roll of tp. And it goes on all day between trips to the b/r and we constantly hear, " promise me it's not pee". Literally, over a hundred times a day some days.

She is asd,FASD,ADHD...and have narrowed it down to a sensory issue. However, we don't really have receptors for wetness,so what we feel like wetness is different from one person to the next. Like we develop our own idea of what wetness feels like. I start to wonder sometimes is what she is feeling is her version of wetness which may be a little off...especially due to her diagnosis she mentioned. It is nice to see it isn't just me...and that it seems to be a common symptom for young girls, but the causes seem so varied between such children.
Jun 08, 2022
Rating
starstarstarstarstar 		Lyme
by: Anonymous

This thread was a blessing to me many years ago when my daughter was struggling with this same problem.

It took 5 years and 20 specialists but she was finally diagnosed with Lyme Disease. As soon as she was treated she no longer experienced the problem.

The biggest obstacle is finding a doctor that will dig deep to find the answers. I would suggest looking up a "Lyme Literate Doctor", or a Functional Medicine Doctor.

You are your child's best advocate. Hang in there mums & dads! It will get better!

Much love from Mexico.
Mar 16, 2022
Rating
starstarstarstarstar 		8 yr old
by: Anonymous

My daughter who is 8 is having this issue. I have noticed small things with getting a drip of something on her and she changes but her constantly feeling like she is wet is getting worse. It disrupts her sleep. She changes underwear constantly. We have ruled out the medical options and was told just to get her in counseling. Any advice or help would be amazing.
Mar 02, 2022
Rating
starstarstarstarstar 		Try it!
by: Anonymous

Try to find a dr that will give you two weeks of azithromycin. It did wonders for my daughter it started at five. Tags socks wetness all of it. Periodically he will need another seven days of the azithromycin when it comes back
Mar 02, 2022
Rating
starstarstarstarstar 		Solutions for wet sensation?
by: Julie

Hi there,
Sorry to hear you are all going through this. I found this site two years ago as my daughter was going through the same. We ended up seeing a doctor said it was PANS. Please have a look at PANS or PANDAS. There is a PANDAS PARENTS Facebook page too.

We gave her antibiotics for 30 days and by day 7 she has recovered and didn't feel the wetness. Unfortunately, we haven't found a long term solution as she has relapsed 3 times since.

We recently started LDN. It's only day 2 so I'm not sure if it will help.
Mar 02, 2022
Rating
starstarstarstarstar 		relieving to find others
by: Anonymous

My 4.5 year old girl is exactly this way. I hate to say this, but it is SO relieving to me to find others who have kids experiencing the same thing. It's like ruining her life, she cries daily about how uncomfortable she is (and the pediatrician has ruled out UTIs, yeast infection, diabetes...). Last night she BEGGED me not to send her to school because she was so uncomfortable all day and her teachers don't understand (and, in her words, "I don't want to disgust them"). At home I can let her not wear pants and that seems to help. She also has issues with socks and tags and underwear and pants (although I think the underwear and pants are mainly due to her "wetness problem"). Does anyone have any solutions!?
Feb 24, 2022
Rating
starstarstarstarstar 		Over wiping
by: Anonymous

My daughter, 5, has the same issue- However, I myself recall going through this phase as a young girl. I relate because I have vivid memories of doing the same thing and still complaining I was wet. Honestly I think they start being more independent and notice this area isn't completely dry- nor should it be. I recall thinking any amount of moisture was highly irritating to me at this age. After a while I just gave up and grew out of it. I will be getting the squatty potty and plush to for my little and see how it goes.
Dec 21, 2021
Rating
starstarstarstarstar 		Also stuck
by: Anonymous

Yesss, my 4 yr old has been this way for a month and I have no answers. The frustration for everyone it building. We also tested and everything came back negative….help!
Jul 27, 2021
Rating
starstarstarstarstar 		Try the squatty potty. It worked for my daughter!
by: Anonymous

Had the same issue with our 5 yo daughter for the past year or so and feel like we found the right solution!

Before you take her through the traumatic process of getting tested and using therapy of any kind, try this first.

Take a look at how your daughter is sitting on the toilet to pee. If she has her legs dangling and knees together, get her a squatty potty (usually for adults and sold on Amazon) so she can keep her feet steady while forcing the knees to open so that her urinary tract open fully release all of her pee.

She may need to bend down while peeing so that she doesn’t leave a mess (we are still working on this part).

We did this with our daughter for a few days when she noticed it herself and blurted out "first time [in a while where] I am not feeling wet!" And it’s been almost a month where we have not had her complain (to put it mildly) about wetness down there.

She didn’t have this problem at school because those toilets are smaller to better fit their small figure.

We feel like we really cracked the code by using the squatty potty. Step stools would work too but may need two, one per foot, to get them to position so they are opening their knees.
The key is: 1) steady foot rest to not tense up leg/groin muscles and 2) knees open to let pee flow out fully.

Give it a try…!
Mar 10, 2021
Rating
starstarstarstarstar 		Solution
by: Anonymous

It has been 2 years for us. Our daughter has shown great improvement and are able to manage it ourselves. We did consult doctors and OTs but they said it looks behavioral.

We noticed a couple of things- it surfaces when she is off her normal routine of school. and the other which is a the main one, when she holds off going to the bathroom alot (a lot meaning only goes 2 times a day) So we have made her aware that she needs to at least go 5 times a day. Which means she has to consume more water.

Hope you find a solution to manage this. I can understand what pain it is to watch your child suffer.
Mar 09, 2021
Rating
starstarstarstarstar 		Homeopathy can help!
by: Anonymous

Hi Julie,

Our daughter was diagnosed with PANS/PANDAS
In 2 years, our most effective treatment has been homeopathy. We work with Resilience Naturopathic based out of San Diego. We are in Canada & they work with their patients remotely. They exclusively work with PANS and PANDAS kids. You don’t necessarily need a diagnosis to work with them. If the symptoms fit, they are able to work with you.

Highly recommend for anyone who is noticing a combination of the following symptoms: urinary symptoms, anxiety, ocd, sensory issues, tics, food restrictions, regression in school performance, emotional liability. You do not need all of these symptoms, but most children will suddenly present with several seemingly overnight, usually after some sort of an illness
Mar 09, 2021
Rating
starstarstarstarstar 		Solutions for wet sensation?
by: Julie

Hi there,

I came across this site and as my daughter has the same wet feeling after urinating and can never seem to be dry enough.

I would love to hear if you ever found answers to help your children? I am desperate to find ways to help mine as she is waking up in the middle of the night screaming.Thank you.

Regards
Julie
Jan 02, 2021
Rating
starstarstarstarstar 		Suggestions for your child's issue
by: D. Gouveia

I am a licensed occupational Therapist and owner of TLC Kids Therapy, Inc., located in New York City. I stumbled across this site and read many of your posts, which are obviously so upsetting to all of you. Hoping my suggestions will help.

It's always a good idea to start with a doctor to determine or rule out different diagnosis. Your GP and/or a urologist are a good place to start. Many of you have found the issue to be PANS/PANDAS. Some an issue with constipation or a UTI. Many seem to have a sensory processing disorder.

From an OT perspective, if your child is showing other signs of a sensory processing disorder such as difficulties wearing clothing, tags on a shirt, mouthing clothing/non-food items, difficulties with sound (ex a blender, blow dryer), picky eater (difficulties with texture, taste, limited diet), toe walker, climb on/under furniture, seeking out or shying away from movement based activities, always on the go, seeking out hugs, clumsy, etc, it is very possible the urination issues are due solely, or in part, to difficulties with sensory processing. If any of these behaviors sound familiar, it would be wise to seek out an OT to complete an evaluation.

If it is determined that your child has a sensory processing disorder, your child's OT would likely put him/her on a sensory diet. This includes a variety of activities (and some foods as well) tailored to their specific needs that will help to reduce or eliminate your child's difficulties processing sensory input. They may recommend the wilbarger brushing protocol or possibly a weighted vest in addition to the sensory diet.

I would suggest medications as a last resort. Start with therapy, supplements, and/or a change in diet. Probiotics, magnesium, fish oil pills are all worth a shot. A reward system along with a toileting schedule, sitting backwards on the toilet with legs spread, a bathing suit bottom or loose shorts instead of underwear could also help. A sensory diet is highly recommended if there is a sensory processing disorder as this will reduce or eliminate the difficulties without meds!

For more information or if you're interested in setting up an appointment, please email. tlckidstherapy@yahoo.com. More info can be found at tlckidstherapynyc.com. Good luck folks!
Apr 27, 2020
Rating
starstarstarstarstar 		Don't lose hope!
by: Anonymous

Hi there, just thought I would write a quick comment to parents going through this. My little girl had started with this issue at around age 6. She saw two pediatricians and a Neurologist who said it wasn't PANDAS. I was so lost. With time it just kind of went away. She is now 11, going to be 12 in a few months and is doing fine! She started her period and is taking that like a champ! If it's like our experience it just took time to go away and it finally did. Don't lose hope!!!
Apr 25, 2020
Rating
starstarstarstarstar 		What did you do?
by: Alyssa

My 4 year old is the same. Cant get dry. What is the deal? I am at my wits end. I already figured it may be sensory because she wont wear short sleeved shirts or shorts. She spends hours in the bathroom its effecting her life as well as everyone in the home. Is there a cure? Should i find a therapist? Help us!
Feb 26, 2020
Rating
starstarstarstarstar 		Comforted, I’m not alone!
by: Exhausted Mommy

I know I shouldn’t but I found comfort in reading all your post and knowing my daughter and me are not alone.. My 8 year old has recently started doing this whole wiping furiously claiming she isn’t dry after going to the restroom. She goes so far as to go back into the restroom after she is dressed and out, saying it’s still not dry!

I’m talking a roll a day at home and the child spends 8 hours at school! This started about two weeks ago and I didn’t even think that it was something to tell her therapist about. She already struggles with sensory issues, anxiety, and constipation. All of your post have been informative, enlightening, and guiding! Thank you!
Feb 26, 2020
Rating
starstarstarstarstar 		Suggestion
by: Anonymous

Thank you for all your comments as we have been dealing with this for a few years. For those that did Pediatric pelvic floor rehab , are there any suggestions for things we can do at home while waiting for assessment? Thank you.
Feb 06, 2020
Rating
starstarstarstarstar 		Baby powder
by: Anonymous

Don’t use baby powder near your child’s genitals, it is known to cause cervical cancer
Feb 04, 2020
Rating
starstarstarstarstar 		So worried
by: MH

Hi,
I found some relief reading the comments as my Daughter has started this obsessive wiping and not feeling dry. It's causing stress on us both. She has some of the other habits of sock/undies having to fit just right, only liking certain pants, etc. I thought the issues were unrelated but now I feel more worried. Dr visit tomorrow to hopefully find some solutions. Prior to this she has always seemed "normal". She is 5 1/2. I feel so helpless.
Jan 14, 2020
Rating
starstarstarstarstar 		My daughter is the same.
by: Anonymous

This is also my daughter to a T. When she turned 6 it started and its only gotten worse. She screams and cries every time she has to pee because she can never feel dry. It's become an huge issue and she was up toilet paper to shove up in her vulva and wont go without it. I'm gonna be talking to my doctor about it asap because shes been tested for everything under the sun but they say that everything is normal and fine.

She potty trained very late at 4.5 years old. She holds her pee for extreme amount of time and goes only once a day which is probably the root of the cause. I just want to crying and meltdowns to stop and for her to be normal again.
Nov 27, 2019
Rating
starstarstarstarstar 		It’s a real medical condition and fixable
by: Anonymous

My daughter (now 9) went through this for YEARS. Excessive wiping, crying because she couldn’t feel dry, wadding up toilet paper - everything you all mentioned. I didn’t know how to help her.

I took her to Vanderbilt pediatric urology and first they said she was constipated so we fixed that but it didn’t help. After the 3rd trip (because I wasn’t giving up) they did a test to see if her urinary muscles were working properly. And they weren’t! Hers were constricting rather than relaxing and weakened. The dr said this happens with kids who tended to ‘hold it in’ when they were younger. Over time it damages the urinary muscles. So we had to build them back up. We did 7 months of muscle physical therapy (called biotherapy - kind of like kegels) at the hospital and for the first time in 4 years she has relief!

She’s not yet 100% but, in her words, about 80% better. No more crying, no more excessive wiping. Do Not Give Up! Talk to your doctor and keep talking to your child. This is a real thing but fixable! I have a happy child again.
Nov 02, 2019
Rating
starstarstarstarstar 		My daughter too! But worse..
by: Alicia

My 5 year old is the same! She spends as long as id let her in the bathroom wiping! Says she is still wet..tried so many things with her including testing and doctor visits..NOW for the past 8 months she wads up a ball of toilet paper and sticks it "up there"..I've tried everything. Iam at a loss. I now just let her be and hope eventually it'll pass
Sep 01, 2019
Rating
starstarstarstarstar 		Granddaughter feels wet
by: Anonymous

Yes! My granddaughter keeps saying she has drops of pee after she goes to the bathroom. This goes on all day. She is also paranoid about chemicals & thinks something went into her mouth by accident. She also says that she just licked something even though I know she didn’t . This has been going on for 5 months with some improvement in the last month. This change in personality came on overnight .

She had a bladder infection which has been treated. She is very smart but this is driving us crazy. She is also obsessive about her socks & shoes as well as clothing touching her skin with certain outfits . She also obsesses about passing gas & having poop in her underwear.
Jul 27, 2019
Rating
starstarstarstarstar 		Excessive wiping
by: Anonymous

My 9 year has been struggling with feeling wet and excessive wiping for 3 years. We recently completed a urodynamic test and it showed that her urinary muscles weren’t working properly. For most people, when we urinate our muscles relax. With her, her muscles are constricting. It’s as if she learned to how urinate the wrong way. This leads to small amounts of urine being trapped and causing a feeling of wetness. We’re starting physical therapy next month to retrain her muscles. If you’re wondering, the urodynamic test and physical therapy are covered by insurance. I pray this helps because it’s breaking my heart that I can’t help her.
Jul 11, 2019
Rating
starstarstarstarstar 		My five year old
by: Anonymous

I have a five year old that went through a wiping fit last summer and got over it fairly quickly. Unfortunately it has returned this summer and thus far lasted over two weeks. She claims she is wet and feels like she has to pee but there is no leaking. She Refuses to get dressed and holds a towel to her privates.

We have been working with an OT for her sensory issues (tactile) that came up with a few strategies (hammock, trampoline, swinging, brushing) to try and calm/distract her but she won't try them. She has a full on meltdown with kicking, screaming and hitting if you take away the toilet paper and I have tried to pick her up and bounce her on trampoline and it's hopeless. Eventually if she is faced with something she really wants she will dress and come down but it can take an hour or more.

I'm at a loss and wondered if it's OCD too or something else. I feel terrible for her and a useless parent.
Mar 26, 2019
Rating
starstarstarstarstar 		Cant get dry
by: Anonymous

After urinating I cant fry my self .Toilet paper falls to mush and this paper mush is big problem . Causing me irritation. I tryout every paper on market but all are made to fol a part before you can dry your self . Leaving sediment in vagina out side which causes sores . I am 69 diabetic go to wc often and this is big problem .Wet wipes do not dry . I try everything but I am wet and smelling of urine . Help .
Feb 27, 2019
Rating
starstarstarstarstar 		Kiddo always feels wet
by: Anonymous

Our kiddo has had this issue for over 3 years now. She feels wet after peeing. We saw a urologist and X-rays showed intense constipation (though she's goes to the bathroom regularly and never showed signs of constipation). We've been on Miralax for over a year. And yet, she still feels wet. It seems to come in waves and currently she's having a bad bout with it. It's so bad that she's told me she has been lying about how often she pees at school b/c she knows we want her to pee more often (b/c the urologist said this would help with the wet feeling). She sits legs wide, torso leaning forward when peeing, she drinks a ton of water, and she's also taking magnesium in the evening.

We've in the past done a strep test and it was negative so don't think it's PANDAS. She's only been on antibiotics a few times in her life (she's 7 now) and I've actually noticed that it seems to worsen after she's been on them.

I'm desperate. This keeps me up at night. I don't know if I should see someone about SPD, or if it's PANDAS (don't think so), or if it's just the constipation. Any thoughts/recommendations/experience would be helpful. This is the only site where I've read people's comments and felt relief that we are not aloe.
Feb 18, 2019
Rating
starstarstarstarstar 		Reply to "I just looked up this problem"
by: Anonymous

I was at my wits end with the same symptoms. We saw a pediatrician, neurologist, urologist and finally a child psychiatrist. My daughter was diagnosed with Sensory Processing Disorder, anxiety and OCD. She was already seeing an OT for SPD. The psychiatrist put her on anti-anxiety medication and we have never looked back! The symptoms eased within weeks of starting the medication.I hope you find some relief for you and your daughter.
Feb 16, 2019
Rating
starstarstarstarstar 		I grew out of it.
by: Anonymous

I used to do this when I was about 7 -11.

I grew out of it but I think it was because around 7 or 8 your body starts getting ready for changes and like you dont really know.

I would say if its compulsive, to the point where shes rubbing skin too hard and hurting herself then its serious but if she just needs an extra minute it's probably fine.
Feb 16, 2019
Rating
starstarstarstarstar 		PANDAS
by: Anonymous

Please consider PANS or PANDAS. As it is only starting to be recognized by the medical community, you will need to be relentless in your fight to help your child. Don’t give up on your child & refuse to be beaten down by the "professionals" These symptoms seem very consistent with with PANS. Misdiagnoses would be detrimental
Feb 04, 2019
Rating
starstarstarstarstar 		Argh!!!
by: Anonymous

Both my daughters (7 and 9) seem to have started doing this - its exhausting and very upsetting for everyone. I get cross and then they get upset that they can't be quick enough at getting ready to go to bed, leave the house etc.

The older one won't go to the loo at school coz she doesn't want people to notice that she's taking ages, and the younger one insists on using a sanitary pad and a big wodge of tp too.

Doctor said just play it down and they'll grow out of it, but its just such an inexplicable problem, and I feel helpless to know what to do. I can't just let them get on with it, what if becomes their 'normal'??

Any advice from people with similar problems? Thanks
Jan 13, 2019
Rating
starstarstarstarstar 		I just looked up this problem
by: Anonymous

Mine too. She is 6 and for last week or so it's getting really bad. Like she's in the bathroom crying with a toilet full to the top of tp. We went to the urgent care and nothing is wrong down there. It's stressful. She is also obsessed with her socks and shoes feeling just right, as well as washing her hands and wiping her behind. I'm considering the fact this could be early signs of ocd, but I really don't know much about it. I'm going to look into a therapist. My feeling is a little therapy couldn't hurt anything.
Jan 07, 2019
Rating
starstarstarstarstar 		In response
by: Anonymous

Could be both, I feel like anxiety and pandas go hand-in-hand. At least with mine anyway.

My seven-year-old has been dealing with this since October . Not so much with the showers, but with the restroom and the clothes. She has always have anxiety issues but it has never been so bad before until she got strep. Now there is very little clothing that That she will wear and she will hold her pee as long as she can because she never feels dry after.

It’s a little better now, we have found a few things that help. In The beginning I had to iron her underwear and put them on her while they were still warm. Somehow that warm feeling made her feel more dry. I don’t have to do that anymore now she is most comfortable when she is not wearing panties but just a loose pair of gym shorts. Also baby powder sprinkle some baby powder on her or on her underwear after she uses the restroom .

We DID Have her tested for strep a in the blood. Her pediatrician suggested that high amounts of strep and he would cause her anxiety to peak. If that was the case, there may be a medication for it. Unfortunately this was not the case with mine but it would be worth checking out with yours.

Hope this helps. Best wishes
Jan 07, 2019
Rating
starstarstarstarstar 		Anxiety or Pandas?
by: Anonymous

Excessive wiping, not showering and wearing same clothes started after a trip with her grandparents to a far off village in India. She has always been picky about certain clothes but never to a point where she wears the same everyday.

She had severe meltdowns about not being able to dry after urinating and showering. The first day after she got back she was literally scared of water. She hated the fact that her hair by the neck and face were still wet. She became extremely irritable.

She also has been strangely picky about how her blanket needs to be done when she sleeps and her pillows. Her sister can’t touch the toys she has arranged. She still needs her alone play time. She is happy in between but definitely more demanding. Note that we are in India for 2 more months (not the same place she visited with her grandparents) but in the city.

Do you think she had a major anxiety attack being in a very strange environment and her mother being away from her? Can anxiety cause some ocd symptoms?

The complaining about being wet is for sometime and now after 3 weeks she has found a process that doesn’t make her feel like that. It takes a lot of time but thankfully no meltdowns. She has occasional accidents (drips) before she runs to use the restroom cause she has been holding her pee for too long.

I wonder if it is anxiety or pandas? She has strep throat in the past but nothing recent, she just had some sore throat which went away on it’s own before we left for India. We did her blood work and everything came negative. No uti either.

We have prescription from doctor to start her with 400mg or amoxicillin for 10 days- twice a day and then once a day for rest of the month. Don’t want to start anything if it is just anxiety.

It is so hard to see your child in so much distress. I hope we all get some extra strength to deal with this.
Nov 18, 2018
Rating
starstarstarstarstar 		Pantyliners
by: Anonymous

I feel the same way, and I'm 40. Panty liners help me. Maybe this will help her.
Oct 14, 2018
Rating
starstarstarstarstar 		This is exactly what I’m going through with my 7 year old
by: Anonymous

Mine just started doing this a couple weeks ago. She has always been funny about her underwear. Every time she pees, she changes her underwear ( makes for a lot of laundry)

Now she has complete meltdowns complaining that no matter how much she wipes, she still can’t get dry. Trips back and forth to the bathroom , changing her underwear 3-4 times and nothing helps. I’m at a loss 😢
Jul 16, 2018
Rating
starstarstarstarstar 		1yr 6 months since the leaking stopped.
by: Anonymous

It will be 2 yrs in December since we started with low doses of Anafranil and still no signs of leaking.

It has changed our life.

25mg 3 times a day.

I still get asked to cut labels out of clothes.
Only certain kids and people are allowed to touch my 8 yr old and she is trying really hard to increase the number, but finds it extremely difficult.

She still washes her hands and body parts if they come into contact with a person by accident.
Still not able to wear underwear or stockings so we cant wear dresses, only long shorts.

We work around situations as they arise. Please remember, you dont owe anyone an explanation, your child was made that way.
Jul 15, 2018
Rating
starstarstarstarstar 		my darling girl age 6
by: gavin

Im shocked to see a pattern emerging.

My little girl has always had issues with clothing labels texture ect. She also has a thing about space... I cant sit on any of the sofas or in certain places in the house.

I never knew anything was really off till she had a complaint about being wet down there and needs to wipe often.

I feel so bad now because ive been so hard on her for being so badly behaved.

Thank you all for you feed back... I would be lost without you.

Jun 15, 2018
Rating
starstarstarstarstar 		Trick Helped a Little
by: Anonymous

My daughter just turned 5. This has been building over the last year - the stress when she feels drippy. Tons of paper. Rubbing herself raw. Full flip outs at times.

She is still young, but does seem to get overly upset when things aren’t as she expects them. I’m not sure if it is sensory, OCD...I’m not really worried about the diagnosis yet. I just know she can be overly emotional about little things and I work on that a lot with her.

This site was a godsend. Thank you all for contributing. I explained to her that I found lots of other kids that had the dripping sensation - and that seemed to help her feel better.

One of the people on the site suggested spreading her legs and leaning forward (putting her hands on the seat directly in front of her) to get out all the pee. The second we did that, I could hear more pee come out. We rocked back and forth to get most of it out. There definitely was extra pee in there somewhere. She said she still felt it after that, but not as much (drops vs. drips).

I’ll tell you how it goes (only been a few days), but I think the fact she didn’t feel alone, I listened and helped her address it, and she has some technique to control the sensation herself has made a huge difference. The intensity has definitely dropped a lot.
Apr 19, 2018
Rating
starstarstarstarstar 		Leaking has stopped since medication was administered
by: Kim

My daughter is turning 8 next month.

It has been a long and difficult 3 yrs since the leaking started.

The leaking has not returned.

The germ phobia is getting better.
The germ phobia is only associated with human contact.

She is wearing loose boys underwear. She can now wear shoes and socks to school, before meds she was barefoot.

She does not wash her hands every 5min, more like every hour.

She still sleeps naked, even if its freezing.
She allows up to 3 close kids to touvh her now.
I cannot touch her after she baths as she sees herself as sterile.

Meds: Totally off Risperlet. Increased Anaphralnil 25mg to maximum dosage of 3 pills a day.
Apr 19, 2018
Rating
starstarstarstarstar 		Anonymous
by: Anna

Thank you (anonymous). I have been reading about PANDAS and I will research doctors.
Apr 18, 2018
Rating
starstarstarstarstar 		Anna
by: Anonymous

My daughter was 3 as well. Also she would just not wear panties & that helped before diagnosis. Socks we would turn inside out or just cut tiny holes on seams. Hope this helps. It is such a stressful thing for mom & baby
Apr 18, 2018
Rating
starstarstarstarstar 		Anna
by: Anonymous

When it gets worse overnight like that it’s called immediate onset PANDAS. Find that boy a doctor who is familiar with PANDAS. That is exactly what happened to my daughter.
Apr 18, 2018
Rating
starstarstarstarstar 		3year old some pire
by: Anna

This behavior has popped up overnight with my 3 year old son. I took him to the doctor today to see if it was a uti, but it wasn't.

After he goes to the bathroom he will put on his pants for a second, and then start screaming and crying that he is wet. I will feel his clothes and they are not wet at all. He refuses to wear his pants and underwear.

The last couple days, while out doing errands I have had to coax him amidst crying to put his pants back on before we leave the bathroom. He insists he is wet. I hate that he is so distressed, and it is super taxing on me and his siblings as well. I hope it is some temporary behavior, but fear there is more to it.

He used to be annoyed at tiny specks of wetness in his underwear, but nothing like this. Today I spent a half hour trying on different shoes and socks because they were irritating him as well. We ended up going without. He has had a hard time with socks for a while, but after adjusting he is usually fine.

It's like his minor behaviors increased 10 fold overnight. I am worried about him! He loves being active and going outside. Today his wouldn't even come outside with us because he was so frustrated that he was wet 😢
Jan 09, 2018
Rating
starstarstarstarstar 		7 yr old daughter stopped leaking
by: Kim

After doubling up on meds in November, it took about 5 to 6 weeks to diminish the leaking feelings.

She no longer plugs herself with tissue paper.

On going issues we are still working on:

Still refuses to wear panties.

Still sleeps naked.

Still refuses to let people touch her as claims human skin has a slimy texture and is contaminated with germs.

After bathing in evening, refuses to touch anything for fear of being contaminated.

Still scrubbing feet clean during bathing, with a sandpaper foot file to get her feet 'extra clean'

Meds dosage: Morning 1 x Anaphranil 0.5mg
Evening 1 x Anaphfanil 0.5mg + 1 x Risperlet 0.5mg
Jan 08, 2018
Rating
starstarstarstarstar 		In response to last comment
by: Anonymous

I am so sorry you are gong through this. It sounds to me as your daughter has been exposed to strep again. Find a doctor to put her on a strong antibiotic for at least one month. Make sure she takes probiotics too. Good luck. I know your frustration.

Signed,

A mother who has lived this...
Jan 06, 2018
Rating
starstarstarstarstar 		Been going through this for the last 4 years
by: Anonymous

My daughter 8 has been going through this for the past 4 years. Needing to go to the washroom constantly to wipe, even though she is not wet. Will be in the bathroom for extended periods of time going through so much toilet paper. She plugs toilets with the paper.

She is convinced it is her underwear giving her this sensation which she at times won't wear. She has resorted to hiding her mountain of toilet paper so not to plug the toilet.

She constantly has her hands down her pants checking for wetness. She was diagnosed with PANDAS 4 years ago and underwent long term antibiotics which really helped.

We have taken a huge slide backwards this winter. Feeling like we are back at square one.
Nov 13, 2017
Rating
starstarstarstarstar 		7 year old daughter - 4 month update
by: Kim

My 7 yr old daughter, mentioned earlier, has been on medication for 4 months now and there in no change to her leaking sensation.She pushes tissue paper into her vagina and refuses to wear panties. She has been diagnosed high functioning autism with extreme sensory ocd. She is extremely bright, academics not an issue and seems to have a photographic memory.

She cannot function without the paper and throws tantrums and screams if I try remove it.

Meds: Anaphranil 0.5mg and Risperdone 0.25mg once a day.

Psyhchiatrist has doubled the dosage as from today.

Will keep you updated.
Nov 12, 2017
Rating
starstarstarstarstar 		Response to anonymous
by: Anonymous

My daughter experienced all of these issues. She was diagnosed with anxiety, sensory processing disorder and OCD. We consulted with a child psychiatrist who put her on medication that has improved her quality of life unbelievably, and made life for all of us so much better.
Nov 11, 2017
Rating
starstarstarstarstar 		Excessive wiping after ruination, all labels. Socks and shoes
by: Anonymous

Our granddaughter is now living with us . She has a big problem with continuous wiping after the toilet. She is using so much toilet roll and rubbing so hard . But still says that she is wet. I’m so worried that she will become sore in that area.

Also socks have to be put on her feet in a special way . Then the shoes have to go on about 20 times. All this before we can get out the door in the morning. She is only 4 .

Also all labels have to be cut off her clothes.

Please could anyone help with this problem.
Thanks
Aug 14, 2017
Rating
starstarstarstarstar 		Update
by: lcarls

Hi Moms (and Dads if there are any on this site!),

I have an update on my youngest, who is now 6. I took her to a pediatric urologist (hard to find, even in Minnesota BTW) and they've seen this quite often. Sometimes, they said it is part of SPD and they refer to an OT/PT for this.

However, in my daughter's case, it seemed to be in addition to her SPD. She was severely constipated. Xrays showed really bad, long-term blockage, which prevents the bladder from full elimination and the poor kids do leak a little or feel like it.

We used Miralax for a month and she did better, then relapsed after we stopped it. We're back on the Miralax and are looking for a permanent solution (probiotics, more water, etc.) to the Miralax but that does help a lot. She still exhibits some symptoms and uses a lot of toilet paper, but the rage and distress that were so prevalent in the past couple of years have dissipated when she's regular. It's not a fix - there are still issues, but constipation will definitely worsen these symptoms.

Also, we have her potty with her feet up on her stepping stool she uses for the sink. Having their knees up in the air like that is a good way of ensuring adequate elimination of urine as well as helping with bowel movements.

Hope this helps!!
Aug 10, 2017
Rating
starstarstarstarstar 		Antidepressants was the cure for us
by: Mom of 8 year old girl 2017

Wiping her vagina raw, hour long tantrums, endless appointments with many different specialists, blood tests, expensive stool tests, we suffered for 3 years until eventually we tried Zoloft, after a few weeks and some tweaking of the meds we have a happy child well adjusted child who is able to function normally in society. I support the notion that this is an anxiety based disorder with obsessive tendencies.

To all the moms who are at their wits end, it will not hurt to try anti anxiety meds.
Aug 09, 2017
Rating
starstarstarstarstar 		Wetness
by: Lana

Yes! My daughter started complaining of feeling "wet" about three years ago when she was four. She would wipe and wipe and wipe and cry bc it would frustrate her.

I wish I could say it's gotten better, but now that she's seven she just shoves her undies up into her labia bc she says it keeps her dry and that way she doesn't have to "feel her underwear". I'm baffled and it's so annoying bc we'll be walking through a public place and she stops to teach her hands down her pants to readjust her undies.

I've suggested not wearing underwear to her (the horror!!) and tried all sorts of underwear but nothing helps. She has not been molested, which is the first thing so many people assume. We had her sit backwards on the toilet for a bit and that seemed to help, but now she won't do that. I have her sugar pills and told them it was medicine for her "vagina problem" and that sort of helped for a bit, but a few months later she was back at it.
Jul 03, 2017
Rating
starstarstarstarstar 		Dear Kim
by: Anonymous

Dear Kim and Daughter.

So sorry to hear that your daughter has been struggling for so long, and you are not getting the help you need.

How old is your daughter?
Have you tried a paediatrician?

Maybe reach out to other moms on this site, for any doctors they can suggest in your area.
Its definitely a psychological issue and not physical.

Without the correct medical assistance, there aren't many alternatives, but in the mean time, I suggest you get your daughter to sit backwards on the toilet as this should also help her to void completely and may help her psychologically.

I truly hope you get the help you need, but just keep trying until you find someone who can help.

Keep posting and I am sure a mom in your area will respond to your plight.

Take care
Jul 02, 2017
Rating
starstarstarstarstar 		Kim
by: Anonymous

Hi!

We went through ALL of that with my daughter. We found aPANDAS doctor. He put her on antibiotics (azithromicin). After a week and a half all the symptoms were gone but she had to stay on it. No more toilet paper stuffed in her privates. If she got off it the wetness came back. She was on it from 5-8 years old. If you could just find a doctor that would give you a month supply to see if it works you would know that it is PANDAS. My daughter had no other PANDAS symptoms just wetness.

Also you can try swimsuit bottoms. Those helped her with the wetness feeling. Good luck!
Jul 02, 2017
Rating
starstarstarstarstar 		Daughter has wet sensation for over a year
by: Kim

My daughter has been to gp, urologist,gynaecologit, psychiatrist, and no one can help me. She pushes toilet paper into her vagina to stop the wet feeling. There is nothing medically wrong with her and have diagnosed her with ocd. She feels like she leaking all day,even when relaxing watching TV.
Jun 24, 2017
Rating
starstarstarstarstar 		Re: Hello moms
by: Anonymous

Congratulations on finding a solution for your daughter and your family! We went through exactly the same thing. For some reason there is a stigma attached to medication for brain disorders like depression and anxiety, particularly when it comes to children. It is a chemical imbalance in the brain that modern medicine allows us to correct!

Our daughter is a happier more functional human being thanks to medication for anxiety and OCD. She no longer finds her sensory issues debilitating, and for this I will be eternally grateful to the medical professionals who identified the issue and found the correct medication and dose to change all of our lives.
Jun 23, 2017
Rating
starstarstarstarstar 		Hello moms
by: Anonymous

After numerous discussions with other moms of girls with the same issues and various discussions with OT's Psychologists, Psychiatrists and neurologists, we have identified its not UTI, my daughter now 7 does struggle with SPD, however the wet feelings, and intense rages have all disappeared.

It wasn't the OT that helped with the "wet" feeling or the rages, but a small dosage of antidepressant which did the trick.

In 2 weeks we had our beautiful daughter back, she can go to the toilet without a problem, not a single episode of the rage we used to witness, she can wear any item of clothing.

I know moms are probably gasping. when we weaned her off the meds due to our continuous guilt, she regressed back to the wet feeling etc, and the rages were more intense as she was now older. she missed an entire term of school, so we reverted back to the medication, and yet again 2 weeks later, she's back to herself and happy again, and enjoying school.

we had to put the guilt aside for my daughters sake, as the alternative was a lot worse and scary, especially for her future, therefore I beg you to think about it before you rule it out.
If your daughters cannot function, making themselves raw after the toilet, missing school etc, just think about what will happen when they start their period.

I am still trying to research why the meds work so well, and when I do, I will be sure to find natural alternatives to help my daughter through childhood and into adulthood without any further regressions.

Hope this helps all the worried mommies and distressed daughters.
Jun 22, 2017
Rating
starstarstarstarstar 		response to last comment
by: Anonymous

This is PANDAS. She does not suffer from anxiety. Get her on a strong antibiotic for over two weeks and you will see major improvement on her "private part" matter. My poor daughter had surgery done to remove extra skin when she was in Kindergarten. However the feeling did not go away until 4 days of antibiotics and "presto" no more feeling wet. Good luck. Glad you found this site.
Jun 21, 2017
Rating
starstarstarstarstar 		Mummy needing help
by: Carly

Hi every just looking for some advice to try and help my little girl. She finds it very hard going to school in the mornings leaving me breaks her heart says she scared and wants mummy, but once she's in she's fine. This has been going on from start of term docs kept saying it was an age thing.

I've brought her back a numerous amount of times and he has put it down to anxiety and to persevere with her which I have been doing bought her healing stones tried sprays everything but nothing is working doctor has finally referred her.

But another thing she has trouble with she keeps taking about her private area leaking as she says and she's totally dry she would use nearly a full toilet roll everytime and I'm just thinking this has been going on for months should I bring her to the doctors about this? Any help would be appreciated. Thanks in advance
Jun 21, 2017
Rating
starstarstarstarstar 		Excessive wiping and rage
by: UK mummy

My daughter is 7, she was diagnosed with a uti in Feb and it took 3 lots of antibiotics to clear it. Now she has the same issue that others describe here- feeling wet, wiping excessively and getting into a state about getting dressed. To the point where she gets so distressed she sometimes can't go to school. It's worse in the morning and evening.

She has also suffered from constipation which we have been treating with movical. She's always been fussy about clothes and labels- we buy seamless socks and she lives in leggings and t shirts- (she's a nightmare to buy clothes for)

I've read with interest your posts - it's reassuring to see she is not the only one.
What treatments have people tried? Do you think this is a form of OCD or could there be something physically wrong? She's had an ultrasound to check kidneys, all the urine tests come back normal now. So I'm left considering if it's a psychological issue.....

I'm in the uk so would be interested to hear thoughts.

I've read some of the posts on PANDAS and see it's a controversial diagnoses- and also scares me! not sure if the uk recognises it or if it's a USA diagnosis?

Any advice from others would be very welcome- thanks in advance!
Jun 20, 2017
Rating
starstarstarstarstar 		To worried Mommy
by: Anonymous

Hello worried Mommy.

My daughter presented with very similar symptoms, and trips to the bathroom would last forever.

We had a meltdown in a public toilet once and she used up every toilet roll available. However she didn't pull her knickers up, she would take towels to dry herself to the point of being raw.

Upon research for over 3 years and numerous doctors visits, these symptoms are a form of OCD.

Maybe check for PANS/PANDAS, but we have found that treating her anxiety, has helped with OCD, SPD and she no longer has any bathroom issues, and can handle any clothing.

Good luck with your doctors visit, and if you are not happy with the outcome, find another doctor who will really listen to her struggles and not blame it on UTI etc.
Jun 19, 2017
Rating
starstarstarstarstar 		To Worried Mummy
by: Anonymous

My lg went through this. Started off with mild SPD but manifested just as yours has. We consulted a child psychiatrist (after seeing an occupational therapist, pediatrician, neurologist, urologist and play therapist) who put her on medication for anxiety and OCD. All our lives have improved immensely. No more wiping or issues with underwear, and a much improved standard of living for our lg.
Jun 16, 2017
Rating
starstarstarstarstar 		WORRIED MUMMY!
by: Anonymous

Hi all, Our Daughter is 8yrs old and has a big problem with wiping her front and back area obsessively after toileting to the point of her bottom bleeding both front and back. Front was so bad at one stage that my GP had to dress it. Now Her back area is bad and bleeding.

She also pulls her knickers up so high like a g string and wont wear them out side her bottom.....she said when she does she feels like she has ants crawling around......she gets itchy from using so much toilet paper & wiping on her towel to get extra dry...she is doing her self damage and I am very worried!

Off to my GP monday, again but wondering if anyone has the same problem with undies worn like a G string? I have tried every type of knicker but NOTHING ever feels right for her. And she will NOT go with out knickers over night or at all to give her self time to heal.

She has mild SPD (Tags, clothing etc) but better with noise now that she's a little older. Also a bit of separation anxiety in unfamiliar surroundings.

Advice would be much appreciated thank you!
Jun 08, 2017
Rating
starstarstarstarstar 		Dry issues
by: Anonymous

My daughter is 7 and has been doing thus fir some time niw, to the extent if stuffing tissue between her legs before putting her underwear on. She also has been a dufficult child, especially where trying to settle her at school. I believe it is a nervous/ comfirt issue. Thankfully she dies seem to be growing out of this and other little foibles as i call them. Hopefully your daughter will too
Apr 19, 2017
Rating
starstarstarstarstar 		Previous comment
by: Anonymous

You are absolutely right about the antibiotic. That is what is working👍
Apr 19, 2017
Rating
starstarstarstarstar 		Pandas/PANS
by: Anonymous

This is PANDAS/PANS. The antibiotics is what is helping. Not the other stuff
Apr 18, 2017
Rating
starstarstarstarstar 		Problem seems to be solved!
by: It Worked!

Our little girl all of the sudden started experiencing the exact same issues. DD dreaded going to the bathroom and when she did it mostly ended up in her being very upset. She would spend several minutes trying to try herself to no avail. She would try to sit again but this also did not work. Lots of tears. Such an episode lasted for about ten to twenty minutes at a time and caused distress to the whole family. If this happened at night when she was very tired she would become somewhat hysterical.

After going to the doctor he suspected urinary tract infection and put her on antibiotics (the tests later came back indicating no infection was present but we had to complete the antibiotics which was dreadful).

We tried a few things at the same time. Firstly we got cranberry juice but this did not resolve the issue (it might have helped but we are not sure). I came across a great article (Google: Help! i think my 6 year-old is incontinent!) which described a problem little girls have with sitting posture. To my mind this made the most sense. Her body grew past the point where her previous posture could work for her.
She used to sit on the toilet with her hands next to her legs - with the new posture she has her hands on the seat in front of her and her legs over the sides where her hands used to be.

The times when she used a new posture she was fine - it took a while for her to turn this into a routine. The problem has been resolved! Thank goodness!
Feb 27, 2017
Rating
starstarstarstarstar 		Help please
by: Renee

My daughter is 4 and she swears that her pee is leaking even though I know she is dry. She insists on baths after she goes to the bath room and will not wear underwear of pull ups unless forced too. She has been doing this for a couple of months and I thought it was just a phase but it is not. She has been checked by the doctor and all is normal. She also has issues with tags in clothes, shoes and so on. Any help would be appreciated.
Feb 17, 2017
Rating
starstarstarstarstar 		Mom - Lariza
by: Bryoni

Hello Lariza

I am so glad you found the site too.
Until you know others out there are struggling with the same challenges your daughters are facing it all seems terribly overwhelming.

If you prefer, you are welcome to e.mail me, and I will try to provide you with some tips/guidance.
bryonidunn@icloud.com
Feb 16, 2017
Rating
starstarstarstarstar 		Pandas
by: Anonymous

I don't think my daughter would have outgrown it without her antibiotics. Our pandas dr did not take insurance either but it was worth every penny. Your daughter can also try swimsuit bottoms. That worked for mine
Feb 16, 2017
Rating
starstarstarstarstar 		So glad I found this site!
by: lcarls

I am so grateful that I found this site! You ladies (and gentlemen if there are any) have validated my concerns. I have two little girls, 8 and 5 who have exhibited their own symptoms similar to what you're all describing. My oldest was diagnosed with ADHD two years ago but she tested for strep when she had blood work done recently to figure out why her immune system doesn't seem to be doing its job to prevent the constant sinus infections she gets. When she tested positive for strep (without symptoms), they just gave her a shot for pneumonia. Her pupils are always dilated and she suffers from severe anxiety.

My youngest, on the other hand, exhibits the SPD symptoms of not being able to handle certain clothes, socks and shoes, having meltdowns when she has to wear certain things (like pants or long socks), excessive wiping and feeling 'wet' and using a ton of toilet paper (and time!) to wipe. It's been so hard. She has been diagnosed with UTIs possibly due to the excessive wiping and damaging the urethra. She feels the need to get "up in there". :( After the last bout of amoxicillin, she felt so much better and told me she did not feel as wet anymore. She also started going commando (without underwear) which she says helped so much. She said she could not stand feeling the wetness from her underwear and figured out that she felt dryer when she was not wearing any. I have no problem with that. Whatever works! So things are better for her right now and we're not dealing with as many meltdowns as we were last year when things seemed to be their worst.

The question I have is this: my oldest is seeing a therapist for her anxiety and my youngest is getting better where meltdowns have diminished and she is learning to de-escalate better. Do you think I should still seek someone to assess her/them? Does this get worse or can they grow out of it? I want to make sure I am doing due diligence here, but I also don't want unnecessary blood work, financial strain (most of the PAN/PANDA experts here in Minnesota do not take insurance), etc. if it's not a progressive issue. If it is, indeed a neuro psychiatric issue that progresses, I would feel compelled to get help. If, however, kids can grow out of it then I think I will wait until behaviors come back or get worse. I honestly want your opinions as it seems some of you have been dealing with these issues for years. Thanks in advance! Lariza
Nov 05, 2016
Rating
starstarstarstarstar 		Excessive wiping after urination
by: Anonymous

My daughter just turned six, and started to have same issue of excessive wiping about six months ago. It got worse in the last two months, she gets very emotional and asks why it has to feel so wrong and strange in her private area. She also touches herself a lot in her private area. We saw her pediatrician last week and talked to her about the situation (not for the first time). She checked her and took urine sample and results came back normal. We are going to see an occupational therapist to try to get some help for my daughter. She started Kindergarten at a new school two months ago, right when it got worse. I still hope this is just a phase and she will get over it. I will post again after we see the OT.
Nov 02, 2016
Rating
starstarstarstarstar 		help with what to do
by: Dallas Help

I would love suggestions on how to handle the excessive wiping. It usually just happens in the morning. We also have issues with going to bed at night. Wearing certain clothes, shoes, socks...
Oct 06, 2016
Rating
starstarstarstarstar 		Yessss
by: Anonymous

Yes!! Mine is almost 6 and now avoids going so it won't happen!!
Oct 03, 2016
Rating
starstarstarstarstar 		Help
by: Twood

I tried to post earlier, so that s may be a duplicate.
I completely relate to this thread. My daughters has been suffering for the past 4 years with all these issues. Have any of you tried "Hardy daily essentials"? It's been recommended to me
Oct 03, 2016
Rating
starstarstarstarstar 		Help
by: Twood

HI, My daughter has been dealing with this since she was 2, she's now six. I relate so much to all the stories. The rage is the worst. Have any of you heard of Hardy daily essentials? Any feedback is appreciated..
Aug 26, 2016
Rating
starstarstarstarstar 		Mom in south Africa
by: Bryoni

Hi all moms and dads.

I have a daughter 6 year old with exactly the same symptoms - started with socks/knickers labels etc, then sudden onset of excessive wiping after the toilet and bath.

This all started when she was 4, and we have been going to OT etc, but the flare ups have intensified, the meltdowns have turned into blind rages.
Paediatrician has said she is Bipolar but I am now searching for a doctor in South Africa who specialises in PANDAS.

Please - any moms in South Africa, please feel free to contact me.
bryonidunn@icloud.com
Aug 09, 2016
Rating
starstarstarstarstar 		response to the pui
by: Anonymous

Thank you so much for the idea to try a "urinating schedule". My daughter has been suffering with the feeling wet sensation for the past 2 months. I took her to the dr 2 weeks ago and they said oh its just constipation and gave us a laxative prescription. So far that has done nothing towards her wetness. I hate it because it not only drives her crazy it makes me crazy as well as it seems it will never go away and i hate seeing her so distraught. So we are definetly going to try your idea and pray it works. Thanks again, hopefully it will help us aswell!
Aug 03, 2016
Rating
starstarstarstarstar 		Phantom Urinary Incontinence - Easy Treatment
by: Anonymous

Hi Again,

Following on my earlier post about constipation, once that cleared, all of the same symptoms persisted - OCD, inability to dress herself because underwear hurt, excessive wiping, feeling wet, tantrums, bed wetting, etc. We were absolutely drowning in life trying to deal with it. I was convinced it was PANDAS, but it wasn't. A visit to a pediatric urologist saved us. It is Phantom Urinary Incontinence. You can read the journal abstract here:

http://www.goldjournal.net/article/S0090-4295(14)00553-6/abstract

We were instructed to try "timed voiding" - where my 4 year old daughter tries to urinate every two hours sitting backwards on the toilet with her legs spread wide. If she pees, great. If she doesn't pee, great. Just need to try. Idea is to retrain the bladder. If she pees in between the two hour timeframe, you still need to put her on the toilet on the two hour schedule. Also, remove all toilet paper from bathrooms and restrict her use to two small bunches per bathroom visit.

You can also use a reward/sticker chart every time she tries. I used M&Ms for about 5 days and now we just do it. I'm not kidding when I say that in 2 days 100% of her OCD symptoms disappeared. Whereas she previously wet the bed 30 of 35 nights, now she has maybe wet the bed 3 times in three weeks. She no longer excessively wipes or feels wet. She is my happy daughter again. I urge you to try it or speak to a urologist about it. It's very easy and saved (the quality) of our lives.
Jul 18, 2016
Rating
starstarstarstarstar 		18 year old daughter
by: Anonymous

My daughter has had sensory issues since she was born. She never liked labels on her clothing and when she was little I had to cut out all the labels . She would break out in rashes with some fabrics or cry till I changes her clothing. No tights ever. Foods were horrid in getting her to accept as a baby. She still has issues with the feel of fabrics and texture of food. She had UTI infections growing up and would wipe herself using lot of toilet paper. She still uses excessive amounts of toilet paper daily and we have a septic system so she has her own trash can at home to put her toilet paper in. She has SPD and has been in counseling for years. It is just something that is unique to her and we have just adjusted to her and her needs. She is a bright lovely young woman who just graduated HS with honors. We just did not make a big deal about it and adjusted because she met the world as who she is and we needed to support her and her needs.
Jul 04, 2016
Rating
starstarstarstarstar 		Good OT in VA or MD
by: Sasha

My daughter has the same problem, she feels wet even after wiping several times and not using any underpants at all. She uses lose pants and complains about being wet all the time. Also she complains about eye irritation/ dry eye/pollen in her eyes and washes her face so many times in a day. I live in VA and I am looking for some good recommendation for OT that I can take my daughter for consultation.

What are the steps should I take, Any natural supplements, Herbs and anything that I can do to help her please..I feel so helpless and she cries non stop when I ask her to wear underpants..
Jun 10, 2016
Rating
starstarstarstarstar 		Try Abdominal X-ray for Constipation
by: Melissa

Hello All,

I couldn't believe when I found this site because my 4 year old daughter has all of these same symptoms. She has always insisted tags be removed and hates seams of any kind, is very particular about clothes. Recently though she was impossible to get out of the house in the morning. She was putting on multiple outfits, and specifically 3-4 pairs of underwear every morning, telling me they were uncomfortable. She was always whiny and irritable about getting dressed.

She freaked out at the pool when trying to put on her bathing suit bottoms and later told me they hurt her. She also started wiping incessantly - I mean 1/2 a roll of toilet paper each time and sometimes would run back into the bathroom saying she was still wet. And she wet the bed at night 5 nights in a row - which she never ever does. And she was complaining of belly pain. Anyway, it seems you all are experiencing similar symptoms.

So in doing research, I discovered some research Steven Hodges has done on constipation and bed wetting. My daughter was making bowel movements every day, but an X-ray confirmed that she is seriously backed up to her colon. All of this poop is pushing against her bladder making her leak, have accidents, feel wet after wiping, etc. Now she needs to be on laxatives for 7 days. I thought I would share in case this helps anyone. Good luck all.
May 26, 2016
Rating
starstarstarstarstar 		Help!
by: Anonymous

My daughter is experiencing this again. First time was when she was about 5 1/2 years old. The Pediatrician did prescribe antibiotics as I was requesting them (after googling symptoms and finally falling on this site, thank god!) and they did seem to work at the time. We have eliminated dairy since then and up until about a month ago she was doing great.

She recently had a sore throat and cold and the symptoms showed up full force. For some reason, for my daughter she seems to get the "meltdowns" at night. She'll wake up and will say her bum is wet and that her sheets are wet too. She'll cry and get all upset and ask why this is happening to her and that she wants to die, and this absolutely kills me inside.

I went back to see my pediatrician and we did the round of antibiotics which again seemed to help (this was May 2 to May 10th, we only did 8 days as it was given as one dose once a day and it made her belly really sore and gave her bad diarrhea so we were told to stop them on the 8th day) She improved immensely for the next two weeks after that.

Now this past weekend she said she was feeling wet and changed her undies quite a few times a day but no "meltdowns" per say. Last night we had a huge one, lasted for about a half hour, still saying she wanted to die and that she hated her life...This just makes me so upset. I have asked her if someone touched her and she confirms that she hasn't. I have been talking to her about that subject since she was very young and she talks to me about everything so I don't suspect that at all.

Also I noticed when she has these meltdowns, her eyes bother her quite a bit, saying they hurt and they sting. I had to get a cold washcloth last night so she could put it on her eyes to help. This morning she woke up happy as a clam, I asked her if she remembers last night and she did. I asked her if she gets these thoughts other than when she is in the middle of a meltdown and she says no. She is relatively happy kid, very artsy and super smart in school. She gets mouthy with us sometimes as she is comfortable with that at home.

In school her teacher says she's a model student, quiet, listens well, avoids confrontation with other kids and will walk away if kids are fighting or arguing for example. We are waiting to see a Neurologist and hopefully this will come soon. I am also afraid that if we do the long term antibiotics that she will eventually get yeast infections, which I know would not help the situation.

Has any of your children seen psychologist and had something come out of it? Or even a Neurologist who would have done other different treatment? Any additional comments or updates on here would be appreciated! Also wondering if any on here know of any Doctors specialising in PANDAS patients in Atlantic Canada? Thanks so much!!!
Mar 31, 2016
Rating
starstarstarstarstar 		Claudia - Mom inSouth Africa
by: Nicole

My 4 1/2 yo daughter has recently started displaying all these behaviors. She feels like she is always wet after a bath or going to the toilet, and refuses to wear panties. She was diagnosed with SPD in May 2015, and is very tactile defensive, but this has recently moved to another level. When she feels like she can't get dry, or has to wear panties, she has a complete meltdown, cries uncontrollably and won't let anyone near her. She has become anxious, emotional and doesn't want to go anywhere, including school. Thanks to this thread I am going to look into pandas. Mom in South Africa, if you are available I would very much appreciate an update on your child's condition, and details of any docs who could help. I am at my wits end.
Mar 22, 2016
Rating
starstarstarstarstar 		Not sure
by: Amy

My daughter too has the constant wet feeling after she urinates. She's had this for at least 4 years, she's now 10. We've seen her PCP, had the usual work up but felt we just had to learn to live with it, or she's grow out of it. She also has the sensory issues mentioned here, socks and tags bother her, certain fabrics, etc. But, she doesn't have the other symptoms. Other than feeling more wet at different stages of life, she's managed most of her "quirks" with simple accommodations. But, the wet feeling persists. I'm not sure if she fits PANDA's, but I don't want her to have to deal with this her entire life either. I'm just looking for help on where else to turn. She has had Strep in the past, and a UTI, nothing major though.
Feb 28, 2016
Rating
starstarstarstarstar 		Response to 2/28 comment
by: Anonymous

This is a response to the Feb 28th posting. My daughter who is now 6, had the exact same issue two years ago. She was ultimately diagnosed with PANDAS, a condition brought on by a bought of Streph! The specialist doctor told me the excessive wiping was the most classic symptom of Pandas in girls. Definitely do some research on it and look for a specialist. Hope this helps. Good luck!
Feb 28, 2016
Rating
starstarstarstarstar 		Excessive wiping
by: Anonymous

My daughter 4, 4 years old has recently become obsessive with wipingI. And noticeably embarrassed about it. She claims she is still wet after using the bathroom and taking a bath. She spends several minutes and tons of toilet paper or a towel after the bath to try to get dry. She is definitely dry, I've checked, but she claims she still feels wet and has to dry inside. While it seems very OCD like and it was my first thought...I can't help worrying that she was touched inappropriately or even maybe as simple as played "doctor"
with a cousin or something worse than OCD going on.

I've read through most of these comments and no one really seems to be concerned with molestation being the cause. I am a stay at home mom. I'm with my daughter all the time unless we have a babysitter. I trust my babysitters but I can't help to think maybe a boyfriend came by or whatnot? All in all I fear the worst but are my fears off base do you think?
Jan 13, 2016
Rating
starstarstarstarstar 		To Alyona
by: Anonymous

Our daughter's symptoms (inattention, difficulty focusing, dramatic decline in school work, decline in handwriting & art, memory difficulties, emotional lability, intrusive thoughts, dilated pupils) began very suddenly when she was in 1st grade...she was like a different child. The symptoms of PANDAS fit her however she was negative for strep. We saw a PANDAS specialist (Dr. T) and he ordered additional blood work and he identified the mycoplasma infection. We treated with antibiotics, she improved somewhat but the mycoplasma was persistent. It took a lengthy time (with different antibiotics, biofilm breaking herbs) to clear her of the mycoplasma infection. Not to say it will be your experience...just sharing with you so you'll have the information.

Please be sure to keep giving probiotics even while on antibiotics. We give Florastor 2x/day (am & pm), we also give Culturelle daily (once in pm with dinner), we also give her a very strong probiotic midday (about 4 hours or more away from the antibiotic). The brand we like is Orthomolecular 225...it's expensive but so worth it for our daughter's recovery. Also...children's motrin can be very helpful when children are experiencing a flare of symptoms. Gluten free/dairy free/Paleo way of eating helped her tremendously. There is autoimmunity in our family and we have made these dietary changes as a family with noticeable health benefits for all of us. Thinking and praying for your daughter and for you...our children will be healed.
Jan 12, 2016
Rating
starstarstarstarstar 		Update
by: Alyona

We had MRI, everything looks normal.
After that we went to pediatrician and we asked to test my daughter for some infections and bacterias. Today we got a call from our Doctor and she said my daughter tested positive for Mycoplasma. Today we started 5 day antibiotics Azithromycin. We hope that all OCD and anxiety symptoms will be gone.
I still think that we have PANS.
Jan 02, 2016
Rating
starstarstarstarstar 		To anylona
by: Anonymous

What you are describing from 12/28 and 12/29 sounds exactly like my daughter. Please post what info u get. Thanks. ;(
Dec 29, 2015
Rating
starstarstarstarstar 		help to Diagnose
by: Alyona

My daughter had rapid strep test that was positive, after that they did culture strep test that came negative. But she was on antibiotics for 10 days anyway. Symptoms didn't go away after antibiotics. Later we did a blood test that showed my daughter didn't have strep. That is why pediatrician didn't think my daughter has Pandas.
Dec 29, 2015
Rating
starstarstarstarstar 		To Alyona
by: Anonymous

There is Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) that causes symptoms from other triggers besides strep and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS). Your daughter's flare this time around could be caused by another trigger like mycoplasma (walking pneumonia). Also...was her strep test sent out for culture in addition to the rapid result? You must always insist on them sending it out for culture. There are also blood tests to check for strep.

All the symptoms sound classic for Pans/Pandas. I would check further with blood work to rule out other infections/triggers. Check out latitudes.org to see information on symptoms and what other parents have done. Remember you are not alone and our children will get better. Gluten/dairy free diet worked wonders for our child. Also helping to build up immune system and support methylation mutation (mthfr). Also seek out Pandas/Pans specialist.
Dec 28, 2015
Rating
starstarstarstarstar 		help to diagnose
by: Alyona

I found this page 3 years ago when my daughter had wiping problem, also she was washing hands a lot, and had OCD symptoms, later she was tested positive for strep, after antibiotics she got better. Pediatrician thought she probably has Pandas.

About 5-6 weeks my daughter started to have anxieties at evening before she would fall asleep. She was saying that she worrying about something and she doesn't know why. Later she started having sexual thoughts about everyone she knows. (She doesn't know what sex really is, mostly her thoughts was about kissing, hugging...) This thoughts was bothering her a lot. Later she started having thoughts that she's hurting someone with knife, sister, mom, dad, friends...

That was really scary, because in general she is very kind and loving. I don't know what to do. This time strep test was negative. We went to neurologist and he wanted my daughter to have MRI. Also doctor recommended to see it's a psychiatrist. I Will appreciate any comments. Thank you.
Dec 17, 2015
Rating
starstarstarstarstar 		Hope this helps
by: Anonymous

Honestly this sounds a lot like me. I'm thinking obsessive compulsive disorder (OCD). Perhaps a therapist or psychologist would help. I'm just speaking from my experience
Dec 07, 2015
Rating
starstarstarstarstar 		In response...more on brushing, etc.
by: Anonymous

In response to the previous comment "Could you elaborate a little more??
How often did you do the brushing protocol?
What is the fishing, magnesium & juice plus for exactly ? How much does she take?
Is she in school now?
What other sensory issues did she have??
We're ready to try something new! Thank you for sharing!"

We did the brushing protocol on the suggestion of our OT every 2 hours for 2 weeks. Yikes. It was a major ordeal but I really think it brought the anxiety of her body down to a more normal level. If you google "Wilbarger Brushing Protocol" you'll find more about it. I'm sure it's on this website, too.

Fish Oils are great for brain function so she takes an adult dose every day. (We buy Barlean's Organic. They have a Lime flavored one.)

Magnesium was suggested by our chiropractor. We actually take Cenitol by Metagenics. It supports the nervous system. She takes it 2-3 times a day with a probiotic drink.

Juice Plus is a whole foods "vitamin" so to speak. It's a MLM thing, so I'm sure if you ask around about it, someone will let you know you can buy it from them! Ha! But it really is a good one--it's whole foods instead of artificial minerals/vitamins, etc.

She is in school now. And there are still sensory things that happen (she's anxious, noises bother her, easily overwhelmed, etc). But as a whole, these things have helped her body calm down.

Hope that helps!
Dec 05, 2015
Rating
starstarstarstarstar 		To "PANDAS on MiraLax"
by: Anonymous

Yes...avoid MiraLax. Our child was on it for constipation for over a year and although it helped to have softer stools they were still huge (voluminous). I believe it's toxic and not good for children. We switched to natural magnesium. We use the Kirkman brand of magnesium citrate powder. You add the powder to a drink of choice...we love KaVita and it dissolves. Our child had PANDAS flare at 6 years old. Weighs approximately 80 pounds now and takes 3/8 of a teaspoon twice per day. One in am with breakfast and second in evening with dinner. So many are deficient is this natural mineral, it's calming and is a stool softener. You titrate up until your child has an easy bowel movement one per day. Go slowly...if you go too fast they will complain of a burning sensation while having a bowel movement. You might consider gluten/dairy free too if PANDAS is an issue. Helped our child tremendously!!
Dec 05, 2015
Rating
starstarstarstarstar 		To-maybe not pandas
by: Anonymous

Could you elaborate a little more??
How often did you do the brushing protocol?
What is the fishing, magnesium & juice plus for exactly ? How much does she take?
Is she in school now?
What other sensory issues did she have??
We're ready to try something new! Thank you for sharing!
Dec 05, 2015
Rating
starstarstarstarstar 		'Pandas' on MiraLax?
by: Anonymous

I'm a Nana with concerns about our 5 year old grand-daughter who has just begun some excessive wiping. I read all entries and saw many commonalities, such as the age of child, history of constipation, UTI/bladder infections, behavioral issues, etc. I am mainly writing to ask how many might be giving, or have given, MiraLax for bowel issues? My grand had been given MiraLax for constipation, from time to time, but no longer since we read a post, here, indicating that it is toxic. I found a blog about MiraLax which contained many, many parent comments that were chilling to read, like these Panda parents. I visited the Dr. today with our grand and her Mommy, to discuss Pandas and Miralax with her. I was happy to hear she was familiar with Pandas, but she only claimed that it is very rare and down-played it.

The doctor is also very familiar with the risks of MiraLax, but says she prescribes it because it is the only available drug (on the market) that reaches higher into the GI track to help rid intestines of hardened materials. An X-ray today revealed extreme blockage. MiraLax is clearly labeled for adults only and the doctor prescribed an adult dose for 3 months! I was horrified because I'd read about such horrific side effects. And I strongly suspect that her excessive wiping may be due to MiraLax, so I am in search of a Pediatric GI specialist to ask about Miralax. Does your child take MiraLax?
Nov 30, 2015
Rating
starstarstarstarstar 		Maybe not PANDAS...
by: Anonymous

My daughter has had this same condition since she was potty trained. Always needing to go to the bathroom b/c she thought she had to go again and then saying she was wet even though she was not! We went to doctors about UTI's, etc. but mainly I just told her, "Well, you're NOT wet! I'm sorry!" (I was so compassionate, right??!)

I finally googled it after she was 8yo and it happened at school. That's when I came to this article and realized all the little "things" about my daughter weren't just b/c she was shy, a girl, the firstborn, etc. They were all sensory related!

I looked into PANDAS like all the comments said but didn't quite feel like that covered it. So, we talked to a few different Occupational Therapists and began the Brushing Protocol, started her on fish oil, magnesium and Juice Plus. We are already into clean eating, so we just try to do so even more now. She also does Listening Therapy for some anxiety, etc. I also do a lot of basic OT with her during the day (big muscle moves, calming techniques, etc).

After the brushing protocol the "wet" thing happened once and only lasted for about 3 minutes (it usually lasted 20m or more). Then it never happened again. It's been almost a year now.

If you're having this issue with your child, don't jump to a label. You never know what small fixes and small life-changes you can make to help your child's overall sensory life.

Thankful I found this page and post! Thanks for sharing all your experiences!
Sep 24, 2015
Rating
starstarstarstarstar 		daughter excessive wiping
by: Anonymous

My 9 yr old daughter does the same thing. She has aspergers and its just one of her many quirks. Certain fabrics, textures to food, and don't let me get started on smells. If the dog comes in all wet and my daughter is eating she can actually taste the dog! We just had her diagnosed with celiac disease and so foods are a big culprit to aiding her little quirks. She is on detrol to help her not have the feeling to go so often so she doesn't have to wipe so much or so hard. She also does the same thing after a bath. I. The bathroom drying herself for at least half an hour. Good luck and keep in touch. Hope all goes well.
Aug 07, 2015
Rating
starstarstarstarstar 		It's pandas
by: Anonymous

Yep my daughter did the sitting on her foot thing & grabbing her crotch. We couldn't leave the house. I finally gave up & felt terrible from trying to get her to stop. I just told her it was ok & to grab it if she needed to feel better. She's 7 now. Diagnosed with PANDAS at 5. She stopped all of it after being on antibiotics for a week. She's been on them ever since
Aug 06, 2015
Rating
starstarstarstarstar 		wow, my 7 yr old daughter does the same
by: katie

For a minute i thought I was reading about my own daughter. She doesn't like tags, or any clothes that are "itchy" to her. My biggest concern is that she constantly grabs her crotch, no matter where we are she does it. She claims its cuz she always feels like she has to pee, she also wipes excessively, and is in bathroom forever. I've told her that its something she only does in the privacy if her own room, and not in public, but she gets extremely upset (almost crying) and says she can't help it. When she is sitting she always sits on her foot. Its frustrating and embarrassing, though I know its very normal to explore, I feel she is obviously over doing it. I've also had her tested for bladder infections, which obviously came back normal. I don't know what to do!!!!!!!!
Jul 08, 2015
Rating
starstarstarstarstar 		It's confusing
by: Anonymous

I had something similar happen with my daughter. I let my daughter know that her genitalia is similar to her mouth in that it may never feel completely "dry" and that it's not really supposed to be either. You may even be very specific with her and give her an exact number of wipes (3-5) and tell her that once she wipes that many times, that whatever is left, is supposed to be there. I hope this helps.
Jul 07, 2015
Rating
starstarstarstarstar 		There is hope
by: Anonymous in UK

Just a short note to the lady who wrote on June 4th, I wrote on May 3rd. I wanted to give you details of the clinical psychologist we saw, though I'm sure there are many other great ones out there we found her to be a great support. She is Dr Joanne Jordan, based in York, England, phone numbers 01904 673050, 07518057042. I saw her once with my daughter and spoke to her on the phone as a follow up with my husband.

When we met my daughter did not want to discuss her situation so played on jo's phone, while we spoke. Jo listened, gave suggestions of things I could try and ways she was happy to support (by phone follow ups, by speaking to our daughters school) and gave me hope that while the behaviour was serious it was not entrenched and she believed could and would improve.

I hope that helps, love and prayers.

Ps I also rang the helpline of "young minds" and amazingly spoke to a lady who had a similar condition to my daughter, when she was 7. She also gave me hope that this was not going to ruin my little girls life.
Jul 06, 2015
Rating
starstarstarstarstar 		There is help
by: Anonymous

Hang in there Maria...there is help for your daughter. There are dietary changes that will help...going gluten and dairy free. Eating a diet that is free of processed foods. Bone broths are wonderful for healing the gut. There are doctors you can consult to get testing to see if her behaviors could be caused by an infection in her system. Google top Pandas doctors. We have seen a pandas doctor...Dr. T. In NJ that helped our daughter tremendously. Remember you are not alone and our children will be healed. Our daughter started with symptoms at age 6 too and she is 10 now and doing wonderfully. She will be in our prayers.
Jul 06, 2015
Rating
starstarstarstarstar 		my daughter too
by: Maria

my nearly 6 year old says she still feels wet after going toilet and will only go twice a day. She also has had tics, socks don't feel right, shoes too tight, labels have to be cut off, doesn't like the feeling of a shower or having her head touched so I can't comb her hair. currently she is sucking her hair all the time. She was 10 weeks premature. I feel like crying in the morning when trying to get her to school, do they ever grow out of it?
Jun 30, 2015
Rating
starstarstarstarstar 		Linden method
by: Anonymous

I would recommend using the child's version of the linden method... It really works for anxiety, OCD etc it was my saving grace and I now use the pillars for my daughter who is also showing anxious signs. Sadly most doctors just don't get it! Good luck be positive.
Jun 25, 2015
Rating
starstarstarstarstar 		Mothers United
by: Anonymous

Hello my daughter walks on her tip toes, humps the floor, has lots of aggression , wen having a conversation she can't answer in a complete sentence and if she try's it turns to aggression and Anxiety. she is currently an IEP student she's behind in school , although she's very social and not aggressive with other kids. Forgot to mention my 17 year old daughter had the similar aggression n would also hump as a child .

What would you do as a parent ?
Jun 17, 2015
Rating
starstarstarstarstar 		U.S.
by: Anonymous

Sorry we are in the United States
Jun 06, 2015
Rating
starstarstarstarstar 		Last comment
by: Anonymous

are you in the UK? Who is it you saw? I'm willing to travel anywhere in the country to get her help x
Jun 05, 2015
Rating
starstarstarstarstar 		panda
by: Anonymous

Our panda doctor did not require a referral. We will be praying for you. It is such a stressful heartbreaking experience. Ibuprofen & wearing swimsuit bottoms helped my daughter until we got some answers.
Jun 05, 2015
Rating
starstarstarstarstar 		Thank you
by: Anonymous

thank you so much for both your comments. I have searched for pandas doctors in UK (it appears it is generally not recognised). Luckily through an American website there appears to 2 doctors close by. I just need to work on our doctor to refer us now. Fingers crossed it works out. I'm so pleased I found this site and know my daughter is not alone.
Jun 05, 2015
Rating
starstarstarstarstar 		Last comment
by: Anonymous

Absolutely agree!!! Do not go to psychiatrists.. Go to a pandas specialist please!!!!
Jun 05, 2015
Rating
starstarstarstarstar 		PANDA
by: Anonymous

Please look for a pandas Dr. A psychologist will just put her on Meds that will make her look insane. My daughter was 4 as well. She's 7 now doing great. We see our Panda Dr every 3 months. We wasted so much time with regular doctors who just don't get it
Jun 04, 2015
Rating
starstarstarstarstar 		Treatments
by: Anonymous

My 4 year old daughter started with excessive wiping about 2 months ago and It is causing so much heartache. She is now avoiding going to toilet. we have been to the doctor who just said it didn't sound like she had step infection. Are there any other physical disorders it could be?

I am considering taking her to a child psychologist although I don't know how receptive she will be as she doesn't like taking about it and becomes hysterical if I mention taking her to the doctors about it.
May 03, 2015
Rating
starstarstarstarstar 		There is hope
by: Anonymous in UK

Hi, I wanted to write because I found this site such a relief when my daughter (then 4 1/2) started becoming anxious that her bottom was wet when it was not. Often this was after going to the toilet, going swimming or in the bath, but not always.

She was displaying other anxiety related behaviour (including that around the feel and fit of clothing & shoes, chewing clothing and hair, biting nails and toenails, uncharacteristic aggression towards all immediate family members, night terrors and occasionally wetting). But the excessive wiping following urination and meltdowns when I tried, both calmly and less calmly, to convince her to pull her pants up were the most distressing. At the time I thought it would break us all.

This was just over a year ago. We saw our GP, a psychologist, we prayed and asked friends to pray and we moved her school. (She was having a bad time there for several reasons and we feel the anxiety mostly if not entirely stemmed from school).

And now, though she is still a sensitive little girl, she is so much improved. It's happened very gradually and there has been the odd backwards step. She still uses a little more toilet paper than most and is quite particular about her clothing choices. But we feel we have our little girl back.

I want to encourage you that there is hope. Your little girls can get better as ours did. Love and prayers to you all.
Apr 17, 2015
Rating
starstarstarstarstar 		Dr. In Austin
by: Anonymous

This is my daughter to a T. Strep test came back negative with reg pedi. Any panda Dr. In Austin?
Mar 07, 2015
Rating
starstarstarstarstar 		Childrens Meds Colors and Flavors
by: Anonymous

Artificial colorings and flavoring are found in many children's and adult medications including antibiotics and can have the effect of markedly increasing anxiety. It is sometimes possible to go to a compounding chemist who may be able to provide meds free of colorings and flavoring or ask the pharmacist for suitable dose in a capsule form which can then be pulled apart and the powder mixed with something to make it palatable such as a small amount of sugar and milk, natural syrup or stewed fruit.

I would highly recommend Fed Up with Food website / Sue Dengate which has more information on the possible effects of food additives and intolerances.
Feb 27, 2015
Rating
starstarstarstarstar 		Confused Now
by: all4destiny2005@gmail.com

After reading everyones posts I am more confused now about my daughters condition than ever before. What is Pandas I have never heard of this ever. Is it sensory processing disorder just a different name for it. The symptoms are identical. My daughter was diagnosed with sensory processing and severe/anxiety when she was 6, shes now almost 10. We went to be occupational therapy for 6 months and it may have helped a little. We have just learned to deal with it and she is now home schooled. It sounds so much like pandas I'm scared now that we are missing the boat.
Feb 27, 2015
Rating
starstarstarstarstar 		wiping
by: all4destiny2005@gmail.com

My daughter is almost 10 and has SPD and anxiety. She does the exact thing except she has to wipe with towels 2 or 3 at a time. We can't keep up with the laundry ever. I hope she grows out of it soon but so far there is no changing habbits. This is my email if you have questions about SPD
Jan 21, 2015
Rating
starstarstarstarstar 		Claudia
by: Anonymous

Dear UK Mom, I am in South Africa and we are really battling to find a Pandas dr! Whilst we search for the right dr we have her on Zoloft and have had to increase the dose 3 times! She is responding so well! I understand that it is not treating the pandas but it makes life bearable! My husband and I were desperate our daughter was incapable of functioning on a daily basis due to temper tantrums,melt downs and just utter dispare! The anti depressants have changed our lives! She has stopped wiping and she now wears socks and shoes! Amongst many other things! Her true potential is coming through as she is no longer worried about everything and she is no longer scared to learn or transition from place to place!

All the very best!
Jan 21, 2015
Rating
starstarstarstarstar 		Phone consultation
by: Anonymous

Dr. Rosario Trifiletti here in the US does phone consultations. Look him up. He is well known here as an expert in PANDAS and it may be worth it to pay for one of these and see if he has any connections or ideas. That is how, after desperation, I was able to find out my daughter had Lyme.

It seems weird paying for an over the phone consultation, but it was worth it. He took my credit card over the phone.
Jan 21, 2015
Rating
starstarstarstarstar 		UK Mum
by: Anonymous

This is such a heartbreaking story UK Mum. I know how stressful it is for all involved. You feel so hopeless.

Have you ever called a US doctor to see if they could refer you to a dr in the UK that could help? Maybe contact Stanford uni too? Maybe they have inside info that could help you.
Maybe you've gone that route before?

Keep us posted.
So sorry:-(
HM
Jan 21, 2015
Rating
starstarstarstarstar 		Remission and recurrence
by: Nicky

My daughter is 6 1/2 now and I have been commenting here since she was 4. No UK doctors will acknowledge pandas which is frustrating and I am going back again this week to ask them to swab for strep which they have refused to do in the past. My daughter seems to always have the problem but goes through phases of being able to manage it and some when she can't. We saw a psychologist a couple of years ago who helped both my daughter and I manage the situation as and when the anxiety regarding socks and shoes. Occurred, this was very useful. With regards to the excessive wiping I have always just gone with it and allowed daughter to wipe as much as she needs and return to the toilet as often as she needs, this behaviour usually goes on for a shorter time period and I find a calm approach helps, I always make the school aware although invariably she doesn't present these symptoms when disgraced by the school day and her friends.

As a mother it is so distressing to see your child so anxious about something seemingly intangible, my daughter explains to me that the feeling of the socks/shoes/labels etc doesn't hurt but it just isn't right and this affects her to the point of her smacking or stamping on her own feet. She had a cold mid December and this latest flare up has followed that, I have no idea how long it will last and just need to continue to support my distressed girl every morning before school when the act of getting dressed causes her to hyperventilate, sob her heart out and usually after an hour of distress we make it to school. Once we have managed to get everything on and they are seemingly ok you would never know there had been a problem in the first place. It is so hard!!! If anyone has any information on doctors in the UK who will acknowledge the possibility of Pandas I would really appreciate it. Sending lots of love and support to the other parents dealing with this at the moment, I am looking forward to this phase of anxiety passing and at the same time am dreading the next one.
Jan 20, 2015
Rating
starstarstarstarstar 		Amoxicillin
by: Anonymous

Amoxicillin is NOT strong enough. She needs azithromycin or augmentin. Hopefully your ped will switch it!! It took mine daughter 7 days to feel relief on azithromycin
Jan 20, 2015
Rating
starstarstarstarstar 		Daughter on antibiotics but not getting better
by: Anonymous

My daughter is 4 1/2 and fits the exact description of other posts. Started with sensitivity to tags and other clothing challenges about six weeks ago, the the wiping and feeling wet issue started. She was wiping all the time and her bedroom floor covered with tissues and our toilets full of toilet paper. I found this site and felt such relief. I took her to the ped last week and the ped was willing to do a throat swab which came back positive for strep. I felt such victory. She prescribed 20 days of amoxicillin. We've been on it now almost six days and I've not only NOT seem any improvement it seems worse. She's been up six to ten times per night telling me she feels like she needs to go and feels wet and she is full of anxiety about her "problem" as she calls it. She keeps telling me I promised she would get better and just wants to be herself again. I don't know what else to do. For those that found help, what antibiotics do your kids take and how long before you saw a difference? The ped said if this isn't working we should see a psychologist. I am beside myself. I'd welcome suggestions!
Jan 09, 2015
Rating
starstarstarstarstar 		South africa
by: Anonymous

That is exactly how my daughter. Zoloft is just a band aid. If you get a dr to agree on antibiotics I promise you would see a different child within 7 days. Day 6 we had our daughter back. No wetness no problems with clothes nothing. She's been on them for 2 years now. She's fine as long as she takes them. We tried to get off a few months ago but everything came back so she's not ready yet. She takes daily vitamins & probiotics. She did not know we had taken her off for those out there who think it's in their heads
Jan 09, 2015
Rating
starstarstarstarstar 		Find a pandas Dr asap
by: Anonymous

You need to fly somewhere or something. Just find a pandas dr. Don't go to a psychiatrist they will just medicate her with antidepressants. Since it was just in September she would not have to be on antibiotics very long. We didn't get a diagnosis for years & my daughters has been on antibiotics for 2 years now. The sooner you catch it the less treatment she will need. It is so hard to go against your ped but that is finally what we had to do to get my baby some relief.
Jan 09, 2015
Rating
starstarstarstarstar 		Anxiety Claudia 5 years
by: Anxiety

we are in South Africa and really battling to find a Pandas dr. My daughter also had dialated pupils, feels wet when is completely dry, used to battle with clothes if even slightly wet it would be a problem, socks and shoes used to be a problem until I found a shoe she finds comfortable so we have it in every colour. Claudia has been a difficult child since day one but the wiping and melt downs was very sudden onset after a strange rash appeared on her face and arms. Seeing another Child Psych next week, really hoping they investigate the Pandas, they want to do an EEG as she is very twitchy and night. She is on 75grms Zoloft daily which seems to have helped! Seriously hoping we get the right treatment this year!!
Jan 09, 2015
Rating
starstarstarstarstar 		Help please
by: Anonymous

I had my 4 1/2 year old daughter to the doctor today because I suspect that she could have PANDAS. She had strep for the first time in September. Since this she can't tolerate anything wet on her clothes. Now for the last month or so, she insists she isn't dry after repeated wiping. Also her pupils appear to be dilated looking alot of the time. The doctor thinks it's because she started preschool in August and had never been away from me at all. She wants to send her to child psychiatrist. I'm not sure about this at all. We live in a small town in KY. The doctor says she's only had one other patient with PANDAS, and that was an adult who just told her she had it. When I search for PANDAS doctor in my area or in KY, nothing comes up. Any help would be great. My email is pitmantiffany@gmail.com .
Jan 02, 2015
Rating
starstarstarstarstar 		Thank you
by: Anonymous

Thank you for your response. Oddly, I looked up PANDAS doctors in my area, Central Illinois, and in an odd coincidence her pediatrician is the only one listed. I'm obviously willing to drive to Chicago or wherever for the right treatment. Does anyone have a recommendation for a really good doctor within driving distance from me? Maybe the different lyme test is the first step.
Jan 02, 2015
Rating
starstarstarstarstar 		Pandas
by: Original poster

This has PANDAS written all over it. Get to a PANDAS doctor ASAP. I am sure with IGENIX Lyme test you will see that upur daughter has Lyme and needs treatment.
The pediatricians do not understand any of this.
Your story sounds almost identical to my daughters.
Wish I had known about PANDAS when it all began with my daughter.
Jan 02, 2015
Rating
starstarstarstarstar 		Need Advice
by: Anonymous

Hi all, I'm here for mom advice since the doctors seem baffled. My 4 1/2 year old daughter is having major distress from feeling "wet" but is not wet. She is also having some seperation anxiety for the first time in her life. She has never shown signs of sensory or psych disorder before. July 2014, bitten by deer tick, no rash. Early October looked tired and was mildly cranky. Late October had weekly bouts of throwing up. Tested positive twice for strep, treated with two different antibiotics. Now testing negative, has also been constipated (X-ray shows lots of poop, only way we knew). Being treated for the constipation. Normally healthy, but has caught the stomach flu and actual flu since October. Tested negative for Lyme and high "strep markers." I don't know if she's just worn down and constipated, or if I should be going to a PANDAS specialist. Dealing with the wet thing and general crankiness has been much worse than this post sounds. So, investigate pandas and lyme further, really push the docs? I'm in Illinois if anyone has a doctor recommendation. Thank you for taking the time to read.
Dec 08, 2014
Rating
starstarstarstarstar 		Son can't get dry
by: Anonymous

Thank you Candi!
I was concerned about starting probiotics. I saw that some can actually make it worse but that he needs to be on them. Also, needs vitamin B, correct?
I appreciate you taking the time to respond. Very thankful
Dec 04, 2014
Rating
starstarstarstarstar 		response to last post
by: Anonymous

Please do long term antibiotics and not just a week to see real improvement. Get into a PANDA'S specialist. Start on probiotics twice a day. Florastor is the best. In the morning and in the evening. Interesting this is happening to your son as this seems more prevelent in girls with the wetness. My Reagan has been helped so much by our doctor in Houston. Bringing extra clothes is not going to worsen the OCD, as he actually feels wet. The brain inflamation has to get better before he will. Good luck. I've been in your shoes and am still walking in them. We are really on a good path though.
Candi
Dec 04, 2014
Rating
starstarstarstarstar 		Feels wet and wipes excessively
by: Anonymous

My son was about to turn 6 and I get a call from school that he wet his pants. It has never happened before.. (he wanted to be on the potty at 16 months and never looked back. Then after he was 2 he had to remove all of his clothes, no matter where we were, to go number 1 and number 2. That fixed itself after a few years.)
It happened over a week but I noticed that his clothes were dry. He would get upset that he had an accident, I would say "look, they are dry. You didn't have an accident." I wanted to make him feel better but it only made him more angry.
He is now wiping all the time, hands down his pants with paper towel to make sure it's dry, he is very upset and now anxious about it. We took a road trip and he got so anxious... What if I have to pee? What if I feel wet? What will I do?
So incredibly sad to see a little guy so worried.

Now he has meltdowns if a drop of water gets on his clothes. He must change. He gets very angry about it. I try to reassure him that it's ok and he'll dry. That doesn't work. If we are out in public, he is still angry and keeps saying, please mommy please take me home to get a new shirt.

The Dr. did the test for UTI and yeast, all came up negative. Dr. mentioned Pandas and said he would give antibiotics.

I do remember, some months ago, that would he would be sounding out words, reading, he would pull at his pants near penis. I did think that he was doing it because he was anxious about reading. He wants to do things right the 1st time and feels embarrassed when he's not. This is an inherit gene from me..from my dad. It's terrible.

So if he takes the meds and still has signs of Pandas, do you bring shirts for him to change into? I don't because I don't want to make the OCD worse. I try and talk him down, redirect, when we get home he's angry again and then will go change. That is if he thinks he's pee'd or something on his clothes.

What has everyone been doing post antibiotics? Are there books for us to read to help the entire family deal with this? Having them in sports and activities help?
Nov 10, 2014
Rating
starstarstarstarstar 		Praying
by: Anonymous

We are are 2 yrs in of our PANDAS diagnosis so we just have the occasional wiping symptom here & there. Anyway every time I get an email notification that someone has posted a new comment my heart breaks & my stomach turns. I don't wish this on any child or parent. It was a nightmare & I wish there was more information out there for people going through this. Just know you have to look beyond your pediatrician they always brush it off as something else or something that will just pass. I'm praying for you all to find answers & give your girls some relief.
Nov 10, 2014
Rating
starstarstarstarstar 		My child is so particular
by: Anonymous

My little girl is just turned 4 she has exactly the same as all theses other comments the tags in clothes the shoes the coats the particular things she has to do and the wiping is a nightmare this is all new to me as my older girl has nothing like this it is affecting her behaviour because she is so particular about everything. I can't believe other people child has this. An appointment for the doctors is being made to seek professional advice
Oct 29, 2014
Rating
starstarstarstarstar 		Excessive wiping could be OCD
by: Judy

My daughter exhibited the same excessive wiping after urination symptoms as well as many of the sensory issues (shoes and socks don't feel right) others have described when she was a toddler through 1st grade. Couldn't figure out what is was and eventually those issues resolved themselves. However she then started fretting about germs from bodily fluids in 1st grade and at that moment, I realized it was OCD. PANDAS triggers OCD symptoms as well.

My daughter is now if 5th grade and she just got her germ contamination OCD under control. It's been a long and hard road. My recommendation is that your child should get evaluated by a psychiatrist for OCD and other disorders. If your child does have OCD, then you should get her into CBT ERP therapy. You basically expose your child to the things that are upsetting her in a controlled and methodical way and eventually they start to overcome the things that are making them anxious or whatever their brain is stuck on - in this case excessive wiping because her brain is not getting the signal that she has wiped sufficiently. My daughter is also on Zoloft. We resisted meds for 2 years during her previous therapy, but we found the combo of Meds (to help her accept therapy) and ERP got her OCD under control. She is functioning well now and we are looking at taking her off meds in the next 6 months.
Oct 24, 2014
Rating
starstarstarstarstar 		Anxiety
by: Anxiety

I have sent you an email Candi (thank you)

What antibiotic do they put them on for Pandas and is it encephalitis or is it coxsakkie or is it Strepptoccoci, she had a strange un diagnosable rash before the symptoms started, very red butterfly rash but also swollen puffy eyes and it went onto the arms but was slightly more pustule. She has low secretory igA in her gut which is not good for fighting bacteria.

I'm soooo confused.

Lee
Oct 23, 2014
Rating
starstarstarstarstar 		Response
by: Candi

Send me your email.. Mine is crhodes7@comcast.net. I want to send you a rather large document that may be helpful.
Oct 23, 2014
Rating
starstarstarstarstar 		anxiety
by: Anxiety

Hi Candi,

Thanks for the info! Tonsillectomy at at 2 years 9 months due to sleep apnea (enlarged tonsils) which tieters shld I have tested, so far she has come back negative for Strep B, there are no underlying autoimmune problems or allergies. She has been a challenge since day 1. We thought she had epilepsy cos she moves so much in her sleep but the EEG came back with no problems. She is hypermobile has Sensory processing disorder but a complete over achiever except for her auditory memory. Responds better when off gluten, dairy and sugar. We did a comprehensive stool test through Nordic laboratories to find that her IGG levels in her gut are not good and she has mild candida. MRI showed inflamed sinuses but otherwise fine. What's our next step?
Oct 23, 2014
Rating
starstarstarstarstar 		in response to the last post
by: Anonymous

Antidepressants are just masking the problem. You need to have her titers tested. Make sure you have a doctor with knowledge of autoimmune encephalitis. I went your route once, but until I found my angel doctor, there was not real improvement. Does she have her tonsils? Has she been treated for antibiotics for a long period of time? These are factors you must consider. She may still need the antidepressants, but the basil ganglia is causing the issues with your daughter. It is brain inflammation. Hope this helps you and does not confuse you more. This page is where I found my first clue as to what was wrong with my daughter. That was 4 years ago and we have seen major improvements. Just because I know I will have questions later on as to what Doctor I see, his name is Shreenath Doctor in Houston, Texas. He is a neuropsychiatry doctor and specializes in clinical pharmacology.
Good Luck!!!

Candi
Oct 23, 2014
Rating
starstarstarstarstar 		Anxiety on the increase
by: Anxiety

My daughter has had the same issues for 5,5 years, we recently put her onto Zoloft because she cld not function from day to day! Within 4 weeks on the anti-depressant we have noticed an 80% improvement in her wiping, tantrums, fussiness and clothe changing, she is now showing interest in learning things like writing her drawing has improved enormously, anxiety is on the increase and these symptoms are typical of an anxious child!

Reality sucks
Oct 17, 2014
Rating
starstarstarstarstar 		Wow, I've been searching for answers
by: Anonymous

My 10 year old daughter started having significant sensory issues with clothes around age 5-6 yrs. So much so, that she would become so frustrated with clothes, that a full out tantrum with screaming, crying would happen. Often before school, and was extremely stressful for her, and for us as parents trying to help her. Prior to that, she had seen a pediatrician at age 2 for constipation, bleeding, and then followed by urinary bladder infection, and holding. We have over the years regularly brought up the sensitivities, and the possibility of high functioning autism since she always had the 'arm flapping' since she was an infant. She has also always had grimaces where she puts her hands under her chin (when excited) and makes different facial expressions. She walks on her toes constantly.

More recently (it's been months now), she constantly goes to the bathroom to wipe. I don't think she is urinating a lot, but rather says, she feels wet. I have tried talking to her about it several times, and thinking that the onset of puberty is the cause, since she started developing before she was 9. She wiped so much this past summer, that she found blood on the paper. She has always had a lot of anxiety issues, and we have noticed the common triggers - loss of sleep, food triggers, and unexpected changes in plans. I've never before heard of PANDA. We have not seen a Doctor yet about her 'wiping', since I thought it was a combination of her anxiety and puberty. We have waited several months now to see a pediatrician and we have an appointment in a week. I was going to ask for an assessment for high functioning autism. I hope and pray that we can help my daughter. She has struggled so much over the years with some of these issues.
Jul 03, 2014
Rating
starstarstarstarstar 		excessive wiping not able to feel dry
by: Sara

My daughter has the same issue she has gone to the point where she doesn't even want to take a shower because water is going to go inside of her and she does not like it and its getting frustrating because she would cry for hours after peeing or showering what is this called and whats the treatment for it.
Jun 10, 2014
Rating
starstarstarstarstar 		Make appt!
by: Anonymous

Jennifer the sooner you get in & get diagnosed the shorter period of time she will have to be on antibiotics. Catch it now! We wasted a year doing tests through our pediatrician & getting no where. My daughter has been on antibiotics for a year now. She had same exact symptoms as yours it is HEARTBREAKING!! One week of antibiotics & all symptoms were gone :)
Jun 10, 2014
Rating
starstarstarstarstar 		Dr Trifiletti in NJ
by: Anonymous

Yes Jennifer, Dr Rosario Trifiletti! He is treating my daughter's Pandas right now, which was brought on by Coxsackie. I called & got an appt within two days.
Jun 10, 2014
Rating
starstarstarstarstar 		NJ dr
by: Jennifer

Can you recommend a pandas dr in NJ?
Jun 10, 2014
Rating
starstarstarstarstar 		Pandas doctor
by: Anonymous

In New Jersey you are right near one of thebest pandas doctors. Google Rosario Triffelletti. Not sure of exact spelling. He is a neurologist who specializes in Pandas! He is the one who finally got my daughters Lyme diagnosis which was causing the pandas symptoms. Get an appointment with hiim. He will listen. Don't waste your time at the pediatrician. Wish I hadn't! Good luck.
Jun 10, 2014
Rating
starstarstarstarstar 		Please help- NJ
by: Jennifer

What once was my confident, happy daughter has become worried, frustrated little girl. I'm reading all of these posts and am being "wowed" with similarities in my own daughter. It's only been about a week but my world is upside down. She is very emotional abt being "wet" but isn't wet. She's afraid of leaving a mark behind so refuses to sit down. She's always been funny abt her socks and very picky abt her clothes. She tested negative for UTI but until I read this, I was convinced the test was wrong. What should I do? I'm in NJ, where is that pandas dr in nj? She is so uncomfortable and it's heart breaking. I'm so upset.
May 29, 2014
Rating
starstarstarstarstar 		Miralax is TOXiC...don't use it!
by: Anonymous

Miralax is NOT safe for anyone...stop using it PLEASE!! If you or your child suffers from constipation use magnesium citrate...it's safe and calming to the nervous system (miralax is TOXIC and especially dangerous for kids or adults who may have a leaky gut). It can cause and exacerbate the symptoms we are trying to heal in our kids. It is molecularly similar to anti-freeze (it's not the same...it's close). Would you put anti-freeze in your body or your child's? Please read the info here and educate yiurselves and your friends and families. http://www.danasview.net/miralax.htm and here http://www.gutsense.org/gutsense/the-role-of-miralax-laxative-in-autism-dementia-alzheimer.html
Here's a good link on the benefits and safety of magnesium http://drcarolyndean.com/2010/10/should-kids-take-magnesium/. Hang in there everyone! Our kids will get better! They will be completely healed from PANDAS.
May 28, 2014
Rating
starstarstarstarstar 		To: Jen
by: Alyona

Hello Jen, my daughter has constipation from time to time, same time she goes to the bathroom a lot. Sometimes if kids can't get rid of all poop - it's pooshing on Urinary bladder. Try to give her Miralax. It what our doctor recommended. Hopefully it will help your daughter.
May 28, 2014
Rating
starstarstarstarstar 		To jen
by: Anonymous

My daughters symptoms we're the exact same as yours at age 3. She's 6 now diagnosed with pandas & on a daily antibiotic. If we try to get the antibiotic it all comes back. It's awful & stressful for you & her. So sorry. Our pandas dr told us the albuterol sometimes made pandas flares worse do we stopped it. She hasn't the horrible cough since we started antibiotics either. Motrin helps. 1 year of trying everything & specialists & sitting different in the potty the whole deal we tried it all nothing worked. My daughters frequent urination changed to wetness & not so much feeling the urge to go
May 28, 2014
Rating
starstarstarstarstar 		Hang in there Jen,
by: Anonymous

My 4yr old daughter's issues are very similar. UTI/Bladder test was negative...my pediatrician tried to steer me away from a PANDAS issue when I brought up the possibility...but my husband & I knew something wasn't right. We found a PANDAS specialist here in NJ...had our first visit & bloodwork 2 weeks ago..we are having follow-up tomorrow to discuss results. From what we see on bloodworm...she tested very high for 3 different strains of Coxsackie, which we knew she had last fall. Additionally, she tested high with a marker for bacterial pneumonia. Motrin has been helping with the symptoms over the past few weeks but I am hoping to get her started on an antibiotic tomorrow.

Keeping pushing forward. You know your child, if you feel like something is wrong, bypass your Pediatrician and go directly to a specialist.
May 28, 2014
Rating
starstarstarstarstar 		3 y/o - Contast Wet/Wiping
by: Jen

Hi everyone!
I come with may questions and concerns for my 3 y/o daughter. Sunday, May 18th I took her to the local Urgent Care and had her tested for a UTI/Bladder Infection, and other issues. The urine test was negative for either item, however she was experiencing the urge to urinate very frequently. They prescribed Amoxicillian for Pnuemonia, and sent us on our way. I followed up with her Pediatrican that Tuesday May 20th, who explained to me that occasionally when toddlers go to the bathroom they don't always get everything out so to let her just sit there and make her laugh, etc to help let the rest drip out. He also prescribed her Abuterol for her horrid cough. Well over the last week, her frequent urge to have to urinte has become insanely more frequent, where she will go the bathroom and two seconds later say she has to go again, then five minutes later she feels like she is dripping. She will wipe her "muffin" for a solid 5 minutes, and it has gotten so bad that she is wearing a pull up to bed at night because she is terrified. She cries over this and I mean hysterics, big tears, and will throw fits. Any help, advice?! I thought maybe a medicine reaction...but it is awful, I can't imagine how she feels, and I am stressed out :(
May 12, 2014
Rating
starstarstarstarstar 		Mycoplasma
by: Anonymous

My daughter tested high for mycoplasma. She takes azithromycin daily & is gluten free
May 12, 2014
Rating
starstarstarstarstar 		Little Miss
by: Claudia

I would be extremely beneficial to find out how many "wet children" have come back positive for Streptoccoci? And which strain of strep is it? What bloods must be done to find out?

Gluten, dairy and sugar free are helping enormously!

Much appreciated
May 04, 2014
Rating
starstarstarstarstar 		Please help!
by: Anonymous

We are going through the same thing with my four yr old daughter. She's had all types of issues...clothes with lines in them, socks & shoes don't feel right, and can't get dry after urinating. Some of the clothing issues have lessened but the wiping is still a big issue! How does a child get diagnosed with PANDAS? Is there a blood test? Thanks so much for any help!
Apr 04, 2014
Rating
starstarstarstarstar 		Thank you!!!!!
by: Anonymous

I just wanted to come back to this page and say a huge thank you to all that have posted on here about PANDAS. I came across this page back in August 2013 because I was trying to find answers to my daughters excessive wiping, along with many other PANDAS symptoms. Because of the info shared on here about PANDAS, I was able to get my her the right help and bring her back when she was so lost. Thank you!!!!!
Mar 03, 2014
Rating
starstarstarstarstar 		Hang in there!
by: Anonymous

Hang in there! Take a deep, cleansing breath and relax as best as you can. We are with you. You are not alone. So many children struggle with PANDAS that can be helped. Find a PANDAS doctor. My daughter abruptly changed when she was six. Lost most all handwriting/drawing skill and math skills, was an emotional roller coaster, socks (underwear, clothes) had to be just right or she would break down. Pupils were huge. She apologized for everything, felt guilty for everything. It's heartbreaking. One of the first PANDAS doctors we saw had us give her children's Motrin chewables (with food) three times per day. He said that the Motrin helps bring down the inflammation in the brain whereby helping symptoms to reduce. With a few days she was noticeably improved. Not something to do long term but may help until you get to a reputable PANDAS doctor. That was 2 years ago and she is so much better! She is dairy/gluten free. We have used antibiotics, herbs, homeopathy, supplements and daily prayer. My prayers are with you and your daughter as well. Remember you are not alone. Blessings to you and your daughter.
Mar 03, 2014
Rating
starstarstarstarstar 		Exact same thing with me
by: Anonymous

I go through the exact same thing with my 6 year old daughter. apart from feeling wet there, her socks have to be straight, her panties worry her and have to be a certain way, her shoe laces have to be a certain way, her bed must be laid straight or a certain way otherwise she gets so irritated and loses her temper. Please help!
Feb 26, 2014
Rating
starstarstarstarstar 		Tic?
by: Anonymous

Hmm I never thought about it as a tic. She has always wiped more then the normal person but the last 5 days has been excessive (40min+). I have to get her attention on something else/redirect her in order to get her to stop. Then she is her fine normal happy self.
Feb 26, 2014
Rating
starstarstarstarstar 		:)
by: Anonymous

Email me at jlgwtx@yahoo.com
Feb 26, 2014
Rating
starstarstarstarstar 		Who is your doctor?
by: Anonymous

Can you tell us who your doctor is that you are using? It would be great to get to a doctor that has dealt with other patients with these similar symptoms. Thank you!
Feb 26, 2014
Rating
starstarstarstarstar 		Basal ganglia
by: Anonymous

Sorry excuse my spelling *basal ganglia
Feb 26, 2014
Rating
starstarstarstarstar 		Wiping
by: Anonymous

No she wipes trying to make the wetness feeling go away. Which is caused from the bacteria/antibodies attacking her basil ganglia. She wipes & wipes trying to just feel dry but it doesn't work
Feb 26, 2014
Rating
starstarstarstarstar 		Original poster
by: Anonymous

The wiping is the OCD tic that is associated with pandas.
Feb 26, 2014
Rating
starstarstarstarstar 		Me again
by: Anonymous

Sorry keep thinking of things to say. My daughter does not have any of the other PANDAS symptoms. No rage, OCD or anxiety. Just the occasional her socks have to be just right or food can't look a certain way but that's about it.
Feb 26, 2014
Rating
starstarstarstarstar 		Also
by: Anonymous

We stopped the azithromycin a week before her tonsillectomy & it all Kam back. Afterwards we waited a few dys then put her back on it & again it took 7 days. Then just that morning on day 7 she was back to our normal precious baby girl
Feb 26, 2014
Rating
starstarstarstarstar 		Azithromycin
by: Anonymous

Yes. She takes 250mg a day. She started the wetness at 2 1/2 & she wasn't diagnosed until age 5 when it started getting real bad. We couldn't leave the house & she wouldn't put in pants. We also had her tonsils removed but she still had a flare last month when we all got strep. It was just for a few minutes one morning. We all got tested & started our antibiotics. Her pandas dr switched her to a stronger antibiotic for 2 weeks & then back to the azithromycin after that. Nothing since. She also takes a probiotic to protect her gut.
Feb 26, 2014
Rating
starstarstarstarstar 		Now?
by: Anonymous

On the zithromycin your daughter is doing well? Has she stopped the wiping?
Feb 26, 2014
Rating
starstarstarstarstar 		Hope this helps
by: Anonymous

That is my 6yr old daughter to t. She has been diagnosed with pandas. We did every test under the sun gyno exam & all. She takes a daily antibiotic, zithromycin. The only flea she's had is when the whole family got strep a month ago. It is a tic so there's a difference being at home & being out at school. During a flare if we get her out the door were good. We talk about it use powder & a panty liner to ease her mind. She is also on a gluten free diet & whole food supplements from our nutritionist. I have read the bacteria that comes with loose teeth is the same as strep & can cause flares. Our antibiotic took 7 days to kick in then she was fine. Amox is no strong enough. Our pandas specialist has 4 patients & this is all the same for each.
Feb 26, 2014
Rating
starstarstarstarstar 		thanks for quick reply
by: Anonymous

She had strep on 2/4 - did amoxicillin for 9 days, then did predizone for 5 b/c she broke out in a rash and now doing keflex for 10 days. All strep tests are negative.

The dr we saw yesterday is a pandas specialist. He didnt think she had enough symptoms for pandas - this is her only issue. I might add she has had this issue for years however right now its a million times worse. He thinks the steroid inflamed the issue.

I told her the dr said no more then 3 wipes. She did 3 very long wipes (15m) but did keep it to three this morning. This is so hard!
Feb 26, 2014
Rating
starstarstarstarstar 		Regarding what to do
by: Anonymous

Does she have her tonsils??? Also, is she on a strong enough antibiotic. This sounds like classic PANDAS to me.
Feb 26, 2014
Rating
starstarstarstarstar 		Same thing here!
by: Anonymous

Thank God I found this I'm at my wits end.... My 6 year old is wiping excessively - we have been to many drs - one said maybe Pandas another said he doesnt think so... either way she's been on antibiotics for 6 days and NOTHING has changed. She's wiping so hard and says she's 'wet'. Every morning we go through this and I have to make her leave the bathroom in a fight to goto school - once we are in the car she's fine. At school, etc her teachers say she's spends less then 5 min in the bathroom. At home its at lest 40+min - i'm at my wits end on what to do. She screams 'it's wet' I can't get dry. All the pediatricians won't look 'down there' - do I go to gynecologist? what do I do? Our happy lives are turned upside down - I get frustrated, she's upset...its a mess. Other then the bathroom issue - she's a happy smart thriving kid!

Our dr today suggested we use reward system to get her out - anyone else do that?
Feb 25, 2014
Rating
starstarstarstarstar 		Not SPD, just soy intolerance!
by: Lucky mum

Hi, I came across this page after a sudden onset of symptons and complete change of behaviour in my outgoing 3 year old daughter. She started complaining of a wet bottom and repeatedly wiping, 8 times an hour, even screaming at me in front of a room full of people and pulling her knickers down. The following day she refused to wear any clothes apart from a t-shirt. We tried lots of clothes and none were any good for more than two seconds. We spent a week like this, barely going out unless she was wrapped in a blanket! Lots of tantrums, it was very frustrating and upsetting. She refused to play with other children and clung to me. Eventually she got a rash on the back of her legs, the start of eczema? Our doctor insisted it was food related.... which I thought was nonsense. I then worked out that as we had been told to take her off dairy as it was making her constipated, I had substituted with soya icecream, yoghurts etc. She now cannot tolerate soya, even flour in bread. [This may be related to the fact that I tried her on Wysoy formula at 5 months, when I was weaning her. She could not tolerate dairy via me whilst I was breastfeeding, it gave her constant diarrhoea.] Just one exposure to soya now and she starts putting her hands down her knickers again, embaressing when she is at a dance club! Also the eczema returns. I wanted to share in the hope that it may help some other parents. I realise we are very fortunate that ours was so easily solved and I am very grateful to have my daughter back to normal again.
Jan 22, 2014
Rating
starstarstarstarstar 		Gyno
by: Anonymous

My daughter is 6. We started at 3 with the itchiness & wetness. We saw a gynecologist when she was 4. They put her out & did an exam. They didn't find anything either. We saw several specialists. The only thing that has worked is the daily antibiotics. We tried eliminating all sorts of food as well. Gluten helped some. Hope this helps! Good luck!
Jan 22, 2014
Rating
starstarstarstarstar 		Need Advice
by: Anonymous

My daughter is 5 years old. She has always been particular about her clothes, socks, and shoes. Each season we get a few outfits set aside that she likes and that is all that she will wear. She has always been one to wipe a lot after going to the bathroom and uses lots of toilet paper. A few weeks before Christmas though, things got a lot worse. She is down to only wearing one outfit. I wash it each night so that she will have it to wear to school. She is at the point that she doesn't want to go anywhere if she has to get dressed. Her biggest complaint besides itchiness is that her bum is wet. She cannot get her bum dry the way she would like to. This has caused discipline problems because she gets so upset and angry at Mommy and Daddy for making her put her clothes on. I have read of similar stories on this site. What we have done is take her to an allergist. The allergist has suggested medicine for the itching. this has helped. For the weakness feeling, he proposed that it could be a food allergy. She has a severe nut allergy and when she was younger she had dairy, egg, and chicken allergies but grew out of them. Now her numbers for soy are a little high, so he wants me to try to eliminate soy from her diet. We are trying these things. Not sure we're to go from here. Should we see a gynecologist or her pediatrician about the bum issue? Any ideas would be greatly appreciated.
Jan 15, 2014
Rating
starstarstarstarstar 		Happy mom!!!!
by: Anonymous

So we had our first visit with the Pediatrician this afternoon and I am so happy to say that after examining my daughter and listening to our story/symptoms the Pediatrician diagnosed her with Vulvovaginitis. She prescribed some antibiotics as she said the bacteria could be caused by Strep!!!! All this without me even mentioning this blog/information I had googled and came upon! I was so excited! We started the antibiotics this evening and I can't wait to see if it helps, fingers crossed!!!!
Jan 13, 2014
Rating
starstarstarstarstar 		Support group for wetness!
by: Anonymous

Keep us posted on your visit tomorrow. Good luck! I know what you mean about it taking a toll on your health. When we started all of this my hair started falling out & I couldn't sleep. It was all I could think about & I was getting hand cramps from all the searching on the internet! I cut off friends & family because no one understood what we were going through. They still don't get it. We need a support group. I just don't understand how this can be happening to so many girls & still no one gets it & looks at you like your crazy :(
Jan 13, 2014
Rating
starstarstarstarstar 		Hopeful!
by: Anonymous

So happy to see Caron's post today!!! I have posted on January 5th about my 5 1/2 year old daughther who is experiencing these symptoms right now. Over the Christmas Holidays it was just aweful. She got so frustrated when she went to the bathroom... She still wants me to wipe her when we are at home and I have seen a big improvement in the past 2-3 days especially. I have an appointment with a Pediatrician on Wednesday and I cannot wait! I want to help her so much. Her father and I are stressed out and it has definately taken a toll on my health in the past week. I can't stop thinking about it and I get this knot in my throat everytime she asks me to go with her to the bathroom because I never know what the outcome may be... Sometimes she gets so angry it's just painful to watch her. All we do is hug her and tell her we will help and try to find a solution. She is actually excited to go see the Doctor. Seeing Caron's post has just made my day! Iam hoping for the best anyways! All we do is try to think positive!
Jan 13, 2014
Rating
starstarstarstarstar 		Could be a case of vulvitis
by: Caron pescatore

Our 6 year old daughter has the same problem. When I took her to our pediatrician a couple of years ago and explained that my daughter was always complaining of being wet, Dr, Fisher, after asking my daughter a couple of questions, quickly diagnosed her with vulvitis, which is irritation to the outer folds of the female genatalia. She explained that this is a common condition with young girls and usually persists until they get to puberty when their female hormones start to kick in. As a matter of fact, this condition is so common that she was able to immediately produce a preprinted informational sheet for it. Treatment remedies include simple home remedies such as 20 minute soaks in a tub with 4 tablespoons of baking soda added to the water.....this can be done as often as you like. We initially did it everyday and now only occasionally. Then there is the BIG rule.....no soaps, lotions, etc to the private area.....just plain water. Other treatment remedies include, wearing Cotton underwear, no underwear at night to allow the area to air dry, and applying cortisone to the genatalia. There are others, but these are the ones we've tried. We only started using the cortisone recently as the baking soda soaks were working. But 20 minute baths everyday were getting taxing and whenever we stopped them for any long period she would have, what we call flare ups where she'd complain constantly of feeling wet. Since we started using the cortisone a couple of months ago we've heard no complaints. Don't get me wrong, these remedies will not cure the condition, only make the symptoms more bearable. My daughter says she still feels uncomfortable, but only a little. We were having a discussion about it on the way home from school the other day, and one of the little girls with whom we carpool who is 10 says that she too suffers from the same problem, but it's better as she's gotten older. I hope this helps some of you parents out there. I can totally empathize with your plight. There is nothing more frustrating when you know there's something wrong with your child, but the doctor is telling you it's behavioral. I think I would have gone crazy if that had happened to me. Thank God for Dr. Fisher!
Jan 10, 2014
Rating
starstarstarstarstar 		SR in Australia
by: Anonymous

Tithe person in Australia. This clinic is in Australia. It really sounds they know what they are talking about. I wish I could take my daughter there. Hope you see this!
http://www.adhd.com.au/PANDAS.htm
Jan 10, 2014
Rating
starstarstarstarstar 		It's pandas!
by: Anonymous

I just wanted to share this with everyone who is taking the behavioral therapy approach. The last sentence is why we take the PANDAS approach. My daughter has not had strep infections but has high levels of mycoplasma which has the same effects as strep. No wetness since we started our pandas treatment.

http://www.adhd.com.au/PANDAS.htm

Typically, a child with undiagnosed PANDAS may be taken to the Psychologist and/or Paediatrician for treatment of an onset or exacerbation of ADHD symptoms, oppositional behaviours or OCD. Stimulant or anti-depressant medication may be prescribed and/or a behavioural intervention or counselling initiated. As the infection passes and the strep antibodies reduce, the symptoms gradually subside and parents and clinicians believe that the intervention was successful. However then there is another strep infection, the symptoms return and the process is repeated. The problem is that the brain is being continuously damaged by the repeated attacks by streptococcus antibodies; and after each attack the recovery of damaged brain tissues may not be as complete as we would hope. Eventually the child may develop a chronic psychiatric disorder.
Jan 05, 2014
Rating
starstarstarstarstar 		be calm
by: Nicky

Hi, I have posted a few times before, my daughter is 5 1/2 now and we are definitely over the worst of it. She doesn't wipe excessively now but always wants me to take her to the toilet which I do. Putting socks on are now rarely an issue, when she started a new year at school I presented her with "year 1 socks" quietly dreading her reaction - these were normal socks with seams and not a pair of extortionate seamless socks. She was delighted to have Year 1 socks and has worn them without much issue ever since. For a winter school trip she actually put on 3 pairs of socks - quite unheard of! We have the odd blip and if her socks aren't right she is very quick to have a meltdown and gets very distressed. Luckily this is infrequent. I had no luck when I brought up PANDAs with the doctor, I still feel it may be associated with strep although she has never been tested. I think as our children mature as long as we can be calm and keep them calm about these obvious issues things do start to get better. This is so much easier to say than to do, I was at rock bottom last year when my daughters issues were at their height and it is the not knowing when it will end, if it will end and seeing your child in so much distress with no apparent explanation that makes it so hard. I have mentioned before that we saw a child psychologist which was a great help to both my daughter and me (it really helped me to remain calm during the flare ups) It is a terrible thing to endure and when I read about parents with children who are in their teens and still experiencing these problems my heart goes out to them. Be positive be calm, believe that with your support and understanding whilst your child may continue to experience these problems they will learn how to manage their feelings and it will become easier for both of you. Best of luck to you all xxx
Jan 05, 2014
Rating
starstarstarstarstar 		keep strong!
by: original poster

I think I can speak for all of here that we have all shared those tears (many of them) and frustration. My daughter could not leave the bathroom so we could leave to get to her basketball games which she loved! She knew all of this was going on and I would keep promising her that we would go to the doctor and they would help. And each time the doctor would blame it on a behavior problem. She finally lost trust we would ever get to the bottom of it and so did I. That is why I started this thread to see if anyone else dealt with this and obviously there are a lot of us. You and your daughter are not alone and you will get to the bottom of this to get her some relief. Just please do not let them tell you it is behavior related. The suffering will go on toooo long. Take it from a lot of us here. Keep strong and know you are doing all you can do. When I had reached the end of our rope I did a phone consultation with a neurologist Dr. Rosario Triffiletti (not sure of spelling but you can google him. Well known Pandas doctor) and he is the one who ordered all the blood work that lead us to Lyme which was triggering the pandas symptoms. He had also ordered the blood work for other things like strep too. All of them came back negative for my daughter. He was the only one who finally listened to me. Don't get overwhelmed, keep us posted of your progress and we are all hoping for a fast solution and relief for your daughter!
Jan 05, 2014
Rating
starstarstarstarstar 		Praying for a cure!
by: Anonymous

I feel relieved already seeing that I got a response to my post! I have written down notes to take to the DR when I go. She can be such a sweet little girl and all we can tell her right now, her father and I, is that we love her a lot and we are sure that what she is feeling is not fun... I looked up the ADHD and OCD symptoms and really right now the only thing going on is the wetness feeling after urinating. We have done so much crying these pas few days I don't even feel like eating. I am so afraid this will continue on for years... My husband works away during the week so I am dreading the morning already as he will be already gone and I will have to wake her up at 6:20 in order to take her to daycare for 7:00. I have asked her if she has her meltdowns at school when she goes to the bathroom and she says no, so then I asked her why she does it with us at home and she just says that she doesn't know. She can be fine, playing, doing puzzles, crafts then when she comes and gets me to go to the bathroom I just get this knot in my throat. We are constantly trying to keep her busy now for fear of another meltdown. It's like she has an out of body experience, twisting and turning and grabbing her privates, so, so heartbreaking to see.
Jan 05, 2014
Rating
starstarstarstarstar 		Excessive wiping, feeling wet & itching
by: Anonymous

Hi all I wrote back last year desperate for answers as to why my daughter did this. After visiting the doctor, trying creams for thrush & trying all different types of underwear; such as ones without elastic, one's with, boxer shorts, etc, etc. I found out by my own seeing that my child had ring worm. She was treated for ringworm & I'm so glad to say all this business & the bad times we went through have now run it's cause. She is still sensitive down below now & again but we help this by keeping her clean down below, we keep on top of her hygiene after toilet times & before food, etc, as for her not to catch this again & we keep on top of her eczema too, as this can irritate her in that area aswell. Hope this helps others like my daughter because i empathise so much with everyone going through this, as this was hell for us xxx
Jan 05, 2014
Rating
starstarstarstarstar 		Re:
by: Anonymous

Have her tested for strep too- that's when my daughter flares up- even who'd she shows no symptoms of strep! She still wipes a lot (gathers 4 doubled over sheets of toilet paper to wipe 4x, and then she actually tells her pee "to stay in". And she is fine. This works for her as long as she is strep free.
Jan 05, 2014
Rating
starstarstarstarstar 		Lyme/pandas
by: Original poster

Sounds like she is in the middle of a flare up right now. Bring up Lyme and Pandas with your doctor. Your doctor may not accept your ideas as a possibility. Demand a Lyme test!!!! They cannot test for Pandas, but a neurologist with knowledge of Pandas can listen and determine if this may be a possibility.
My daughter is 13 and was treated for Lyme after having it for 4 years undiagnosed. She has not had a flare up since treatment. If your current doctor does not listen and blames it on a behavior problem, find a new doctor until you get one who will listen. I wasted years with faith in a doctor who blamed it on my child. I feel horrible about it and would never do that gain. A Mom knows best!! Good luck!
Jan 05, 2014
Rating
starstarstarstarstar 		Is there hope???
by: Anonymous

Hi, first of all I am so GRATEFUL to have found this page! My daughter is 5 1/2 and has had this excessive wiping and feelng wet after going to the bathroom for about 2-3 months now. It started with her saying her vagina/anus was itchy and this drove her nuts! We tried creams, unscented soap (since she has exema a bit)and finally I took her to the DR in early December to get her tested for a UTI and Yeast infection. the test came back negative so we tried to tell her everything was fine and that she would learn how to correctly wipe herself...She has always been a strong willed child (is what we were telling ourselves)so we thought this was just inpatience in her part. She complained about her underwear a lot at first so I tried different kinds, thinking they were just the wrong fit for her. At one point the seams on her socks did bother her, but that seemed to go away. Same things for leggings and tights, we tried to avoid them too! Now over the Christmas holidays, things have gotten worse, probably because we are at home a lot and the school routine got disrupted??? Whenever she has to go to the bathroom, she will come wisper in my ear and I will have to go with her. I have to wipe her and tell stories or anything to get the issue of her mind at that time to avoid meltdowns. If I tell her to try it herself she gets beyond upset.She will tell me to wipe 2-3 times in the front and back. It's back to school tomorrow and I am dreading the morning. I am going to call my GP and try to get an appointment tomorow and I guess our journey begins. I am afraid of what will come out of this, how she will be as she gets older. Also, she started the excessive blowing of her nose, saying there is still "snot" in her nose. Can someone PLEASE tell me there is hope for her??? It breaks my heart to pieces to see her act out like that. I have heard that a low dose of penicillin helped some children??? Please, any suggestions would be appreciated! Has anyone ever taken there kids to a Naturopath or osteopath? Even maybe hypnosis? Thanks!
Dec 26, 2013
Rating
starstarstarstarstar 		All of this...
by: SR

My daughter has all of these symptoms and suffers extensively. Wet wet wet. We in Australia (Sydney) and no one believes in PANDAS!!! Is anyone able to help.

Also a GP has suggested a pyrole disorder which are testing for. Has anyone else had this?
Pyrole would explain the anxiety,emotional lability, sensitivities etc, but I am not sure it would explain the ewes feeling after shower and urination.

How awful it is when they look ay you for help and you are unable to do much because there is no one here that's noes about PANDAS.
I would appreciate any help and I will also its later re the pyrole testing.
Nov 11, 2013
Rating
starstarstarstarstar 		Don't worry
by: Anonymous

My daughter did this for about 1 year when she was about 7 . We were initially concerned as she was never told off if she accidentally wet/ stained underwear and wondered why she was so worried !There was nothing that seemed to make it better , and she would also be as concerned about drying her self after a shower . She just seemed to grow out if it or stopped worrying about it so much . We tried not to freak her about about the amount of toilet paper we were going thru and tried to use positive incentives if she took less than 5 -10 min to Get out if the shower /bath and get dressed for example . She is now 9 and doesn't seem concerned at all
Nov 03, 2013
Rating
starstarstarstarstar 		Be prepared
by: Anonymous

Be prepared to be told she will grow out of it & be sent home. I cried at peddler office when my daughter was 4 & this all started. They finally started sending us to specialists. We saw a urologist, gastroenterologist, gynocologist, psychologist, & had many tests done & nothing. We didn't start getting real answers until I found this link & found a pandas dr. Our pediatrician still doesn't agree with us but we had no choice & she finally has some relief after the antibiotics.
Nov 03, 2013
Rating
starstarstarstarstar 		worried, relieved, where to next?
by: Anonymous

Reading all these comments has made me feel somewhat relieved, but still worried of course. This is the only place I have found any potential answers to our 4 yr old daughter's obsessive wiping of perceived drips, feeling of wee dripping, hating socks with toe seams, shrugging off t-shirts with banded sleeves, tugging at shirts with loose bottoms etc. We are so worried and unsure what to do next. Knowing others are experiencing the same helps a bit, but hearing about solutions is even better. I am taking these pages with me to the GP and starting the conversation. Heartbroken but hopeful now. X
Nov 03, 2013
Rating
starstarstarstarstar 		Pandas symptoms
by: Anonymous

The previous post is mine as well. I need to add that we were told that we were lucky that we caught it soon at a young age because later she would have developed all of the other PANDAS symptoms not just the wetness feeling. Please find a PANDAS dr & don't mistake this for behavioral problems because that it is not
Nov 03, 2013
Rating
starstarstarstarstar 		Wetness only symptom
by: Anonymous

I just want to say something about the pans/pandas diagnosis. My daughter is 5 & has the wetness issues & that's it. I would read about Pandas & think no that's not it because that was the only symptom she had. She wasn't OCD & anxious & all of those other things. She just felt wet ALL the time & it made her crazy uncomfortable. So I wasted a lot of time denying it was pandas. Now she has been on antibiotics & she had a tonsillectomy & she feels dry. When we stop the antibiotic she feels the wetness again. So don't let all the other symptoms scare you away. I don't know how long we will do the antibiotics but I know she cannot function normally with the wetness feeling. It is PANDAS
Nov 03, 2013
Rating
starstarstarstarstar 		NE Pans/Pandas conference Nov 9-10 Providence, RI
by: Anonymous

Hi to all you wonderful, loving parents out there. Just wanted to let you all know that you are not alone and to hang in there. There are treatments and help for your precious children. My child's symptoms peaked in first grade. We searched for an answer to what was causing her dramatic change and it is Pans. She is doing much better and thriving! I remember the desperation I felt and just want you all to know that your child can and will get better. If any of you live close to Providence, RI...I urge you to check out the conference this upcoming weekend (Nov 9-10) that some families in the NE have put together. Here's the link...
http://www.nepandasparents.com/conferenceregistration.html
Many great leaders in the Pans/pandas field are presenting. I am not on Facebook (yet) but if you are there is a ton of Pans/Pandas support and information to gather. Blessing to each and every one of you and your beautiful children!
Nov 03, 2013
Rating
starstarstarstarstar 		my 11 yr old
by: Anonymous

It's PANS! This started for us when child was in preschool and exploded in our face in kindergarten. Trying to find the perfect seamless socks...no tags...short sleeves...compulsive leg moving...freakouts over washing hair. Wanting to control what was gonna happen next...saying no over and over to a request to the point of wanting to scream. I was constantly knocking down medical doors...trying to find help...she has sensory disorder one would say...she has a sleep disorder from periodic limb movement interrupting her REM...she has seperation anxiety...she has ocd...she may have bi polar disorder...but to young to diagnose. Well, it would come and go...but the last time she got it...she would think she peed her pants and she was going through five pairs of underwear a day. Her hands became stiff and claw like...her beautiful cursive writing not illegible. Worried about her I showed up at school and she was eating with her hands. No fork or spoon too hard to hold heartbroken I pulled her out and took her to a shrink. Got no where. She mentioned something about a new diagnosis of rapid onset ocd which she was also having... PANDAS. Googled it. Yes...she fit it...five yrs later I found the diagnosis. The answer is penicillin. Low dose every day. Put her on a garlic pill every day for a week and alternate with grapeseed extract and sovereign silver . She is much much better. She will have a flare up but nothing like it used to be. We have our fun loving daughter back. I recommend going to your traditional pediatrician for everything but this. Just go to a Dr who is known to use more natural healing arts for this challenge. You will get more support and better results. It was one heck of a journey. Keep your chin up and hug her for me. God bless.
Oct 19, 2013
Rating
starstarstarstarstar 		To the post before this
by: Anonymous

To the lady that just wrote in that is the age that my daughter started & the same symptoms. First socks then she felt she had to go potty every few minutes. It's heartbreaking. She is now 5 almost 6 & we are dealing with the excessive wiping. The frequent urination turned into the wet feeling. I remember being in your desperate place. If you would like to hear about our exhausting journey you can email me at jlgwtx@yahoo.com.
Oct 19, 2013
Rating
starstarstarstarstar 		Excessive wiping and sock issue
by: Anonymous

I am nearly crying reading these comments my daughter has been obsessed with socks and shoes for a few months now getting very upset that they are not right, now more recently it's the toilet saying she isn't dry enough and needs to wipe again she is now also saying she needs a wee when in fact she doesn't and is just sitting on it for hours I am at my wits end and don't know what to do is she only 3 years old and outgoing and very intelligent I have no idea why this has just started
Oct 18, 2013
Rating
starstarstarstarstar 		To Nicole F
by: Anonymous

To Nicole F. Pinworms & uti testing is where we started a year & 1/2 ago. We started letting her wear a panty liner & use powder to help her leave the house. From there we have been to a urologist, gastroenterologist , gynecologist , behavioral specialist & then finally to a neurologist who has diagnosed her with pandas. He put her on a gluten free diet & that helped A LOT. She had had a tonsillectomy & now we are waiting to start a round of antibiotics hoping this will be the end of it. It's a frustrating sad desperate journey we have been on.
Oct 16, 2013
Rating
starstarstarstarstar 		Update from May 30th post
by: Anonymous

I wanted to update those of you who have had these issues but have not found a medical reason for them. Our issues subsided and then pretty much went away. We consulted a family psychologist who chalked this up to our daughter feeling "out of control" about something in her life. This was how it was coming out. We're not sure what it was but we were taught how to calmly connect with her in situations when she was upset about the supposed wetness--we tried to make her feel understood and heard. It really helped. I highly recommend consulting with a family therapist who can help find the root of the issue and how there may be ways to find the connectedness your child is looking for.
Oct 16, 2013
Rating
starstarstarstarstar 		Same problem, excessive wiping, itchy privates
by: Nicole F

My five year old started becoming obsessed that she was not dry enough down there after going the bathroom. She will wipe, and even if she is dry she complains she feels wet. Now the latest thing that has happened is that she is itching that area. She says it itches and she is constantly scratching.

This is happening in preschool and at home. I've brought her to the PEDIATRITION twice. She's been tested for a UTI, pinworms - they actually treated her for pinworms since there are so many false positives. We've tried anti fungal creams, steroid creams.....I'm at a loss and not sure what to do! It's starting to effect her days at school. The teachers are being great, but they are constantly having to ask her to go wash her hands. I'm about ready to call a child psych:(
Oct 04, 2013
Rating
starstarstarstarstar 		Thanks!
by: Anonymous

Thank you so much for that update!! I'm crying right now from reading it. My daughter is having her tonsillectomy on the 15th & we are also seeing a chiropractor. We are off of gluten dairy corn & rice! This gives me hope with the tonsillectomy otherwise I'm afraid I might have to take her out of school & homeschool her. Thanks again!!
Oct 04, 2013
Rating
starstarstarstarstar 		Things that have helped us
by: Anonymous

It was almost a year ago that I found this message board in a desperate attempt to understand what was going on with our 5 year old daughter. Our story is very similar to those told here so I wanted to share with you some of the things that seem to have helped us.

We've seen every kind of specialist imaginable along our journey including a neurologist, urologist, allergist, an infectious disease specialist, and an ENT. Only two of them were even open to the idea that PANDAS existed so we never received that as a diagnosis. Through our own vigilance, we found that our daughter was actually a strep carrier. She had to go through a really long round of a strong antibiotics to get rid of it. She never showed any symptoms of the strep so it was very hard to tell when she had it. For several reasons, we decided to have her tonsils and adenoids removed. She'd had a long history of illness and we certainly wanted to do what we could to avoid getting strep again. In our case, once we got rid of the strep and the tonsils, she began to slowly get better. The OCD symptoms decreased in severity, some going away altogether, and she began doing better in school. It took a long time to recover, but we did slowly see significant improvement.

As part of our alternative care strategy, we began seeing a chiropractor who has specialty training in pediatric neurological disorders. One of the first things she recommended was taking our daughter off of dairy and gluten. We've been dairy and gluten free for about 5 months and it has made a big difference in her overall disposition and mood. I hope that all of you will take the time to read how gluten and dairy can cause things like anxiety and depression even without gastrointestinal symptoms.

I believe our daughter did have PANDAS with mild presentation, but that was helped by getting rid of the strep infection and having her tonsils removed. Going dairy and gluten free was like the icing on the cake. Our multifaceted approach to her wellness is paying off. She still wants to change undies twice after going potty, but it is nothing compared to the hopeless, desperate place we were at last year.

In closing, please keep in mind that I am not a medical professional. I am just a mom who's been where you all are today.
Sep 18, 2013
Rating
starstarstarstarstar 		Smell of urine
by: Nicky

Hi, you may well have tried the following but here are a few suggestions:-
- small panty liners - these will absorb excess urine and reduce the smell during the day.
- providing a change of underwear so that she can sort herself out if she becomes aware of dampness
- provide wet toilet wipes there are lots of child friendly ones and the novelty may give more incentive to wipe and get clean.
- make a chart for number of wipes, is she not wiping at all?

Maybe set a challenge of 2 wipes per wee and reward at the end of the week etc...
Regular showers and baths and conversation about being clean and smelling nice may well help, also has she had a urine test just to make sure there isn't an infection, she could also be holding on for some reason and just letting a bit out hence dampness and odor. Maybe check her frequency at school or ask teachers, they are usually quite helpful.
X
Sep 17, 2013
Rating
starstarstarstarstar 		smelling like urine
by: Anonymous

What do you do when your six year old doesn't wipe them self dry and smell like urine.
Aug 25, 2013
Rating
starstarstarstarstar 		Same problem for 19 years
by: Anonymous

I am incredibly relieved and saddened to have found this thread. I have struggled with this problem for as long as I can remember. I was never able to get "dry" and could only wear loose pants as a little girl. To give some hope, it did get much easier for me when I discovered just folding up a bit of toilet paper and putting it in my vulva. (I know that sounds crazy but really any kind of relief is welcomed.) I can function completely normally as a 19 y/o but occasionally flare ups do happen which are incredibly uncomfortable but manageable.

I have been reading about all sorts of possible causes and the PANDAS diagnosis seems quite accurate as I had such but strep and side effects that I needed dental surgery at 2. Ever since then I have had these symptoms. I also have incredible sensory issues in my nose. It oftentimes feels too dry and for many years I could not sleep without vaseline in my nose. All of these symptoms seemed to diminish with age but like I've said it has been 19 years of discomfort with some periods of dormancy. I have never been diagnosed with OCD or anything like it but this behavior certainly seems reflective of that. I am not sure if it is linked, but because all of this seems to be in a hypothetical stage anyway, I will put out there that I also developed a fear of womanhood often said to be linked to the tissue in the nose and vagina/ vulva. I had trouble with my body and developed an eating disorder around 13 which has never gone away but like the sensory issues lies mostly dormant. I really hope this helps as I remember it being quite uncomfortable and miserable as a little kid when people did not understand.
Jul 17, 2013
Rating
starstarstarstarstar 		Gluten
by: Anonymous

I have written in several times already but I wanted to give an update. My daughter is 5 she wiped excessively, has to wear a panty liner & put powder on several times a day. Last Wednesday we cut gluten out of her diet. Wednesday night she slept in panties instead of a towel & did not feel wet. It is hard & not fun being gluten free but it is worth her having peace of mind & not spending so much time in the bathroom & crying when we have to leave the house. Just in case anyone wanted to give it a try!
Jun 28, 2013
Rating
starstarstarstarstar 		I thought I was alone!
by: Anonymous

I'm 20. I've always been extremely organized. If someone touched something of mine, I would freak out, even if they didn't move it. When I was little, I hated socks and shoes. It would take me forever to put them on. I'd sit in the corner crying. Eventually I figured out that thin socks pulled very tightly over my toes wasn't as bad.

In middle school, I joined a soccer team. The socks I had to wear were extremely thick and I couldn't do it. To make up for the thickness, I tied my shoes so tight that I almost lost circulation. I quit after that season.

Underwear has also been an issue for me. If it doesn't go up to a certain height on my waist or completely cover my butt, I feel uncomfortable. The texture of pants touching me in those areas still hasn't stopped bothering me.

I started counseling a few months ago and found out I have 2 anxiety disorders (and depression). I had known something was wrong with me for years, but I didn't know what. I can remember having panic attacks as far back as age 5. I'm currently working on an official diagnosis, but my parents are against getting help.

I started birth control a year ago because I had heavy periods. It's made my periods very light and almost gotten rid of the awful cramps I used to have. The downside is that it heightens my anxiety, which is usually worsened by noise. I have a brother who plays drums, and I had to transfer to a different college because the dorms were too loud. Even the library wasn't an option for me because of the noise level. I had to move back home, and a few months later, my parents kicked me out while I was in the middle of a panic attack because they couldn't handle it, despite me never going to them for help during one.

Since taking the birth control, I've had this strange feeling that I'm never dry. I spend about 10 minutes just to go to the bathroom. Morning and nights are the worst for me. I feel completely disgusting, and I'll usually use up to a whole roll of toilet paper a day. After showering, I have to sit in front of a fan to dry off (after wiping with both a dry towel AND toilet paper). I constantly wear panty liners. The only time I don't feel the need to wipe excessively is when I have my period.

When I don't feel dry, my mood worsens and I get extremely irritable. Some days I can barely function. I worry that if I leave the house, I won't be able to find a bathroom if I need to wipe. Swimming at other people's houses has become a horror for me. I've been using Summer's Eve deodorant spray (which is basically baby powder spray, but meant for that area). After I spray it, I feel a little better because it dries the area a bit and smells nicer than baby powder. It comes in different scents, and usually in the tampon aisle. Maybe it will help someone else.
Jun 26, 2013
Rating
starstarstarstarstar 		5yr old feeling wet
by: Anonymous

I have wrote in previously. We are currently seeing a neuropsychiatric dr. He has started lots of blood work but we haven't got the results yet. I will keep you all posted. He did suggest we have our house checked for mold. We are currently doing that. He said a lot of autoimmune / sensory brain problems can start with that. Just putting it out there
Jun 26, 2013
Rating
starstarstarstarstar 		Always feeling wet
by: Anonymous

My 6 year old has the same problem. I am so worried about her. She changes her underwear more then 10 times in a day. Now it's getting worse and worse..Any help from anybody please.. I would really appreciate. Thanks
Jun 05, 2013
Rating
starstarstarstarstar 		Excessive wiping
by: Anonymous

My 8 yr old just started this in the last week or so. Needing to keep wiping because she feels herself and says she is still wet although I'm sure she is dry. The other night, we had a counseling appt. and she said she couldn't go because she couldn't get off the toilet. I suggested wrapping some toilet paper around her underwear but that was not an option for her. She finally got a small hand towel and wrapped it around herself, then pulled up her underwear and pants. I let her stay like that for 15 min or so, but said we have to go and you can't go out like that, it looked like she had on a diaper. Then I had a thought, why not have her try to use a menstrual pad. I had ultra thin ones with wings. She agreed to try that, at least if she dripped she wouldn't feel wet. That worked for the night and I went out an bought just panty liners because they are smaller. She still feels she has to wipe a lot, but at least she is willing to go to the bathroom. She, as others have noted, would hold it for 12 - 14 hrs minimum before going. We haven't seen a Dr. yet, if this continues we'll go in the next week or so once school is out. I never thought of powder but it seems like that might get out of control compared to wearing the pad.
Jun 03, 2013
Rating
starstarstarstarstar 		Just wondering ...
by: Anonymous

Hi everyone,

I have commented previously ... I have a now 7 year old daughter who has been through stages of excessive wiping, sensitivity with socks etc ... I went to a talk recently by an Occupational Therapist regarding children with heightened sensitivity and sensory processing disorder. It was completely reassuring to hear these are relatively common complaints - and yet there doesn't seem to be a great deal of support from the medical profession. Our pediatrician is not overly helpful - and I am surprised there is not more research into these issues. Or perhaps there is and I'm just not sure where to find it? One of the most interesting comments she made was that there is a correlation between children who have traumatic births/early childhood trauma and heighted sensitivity.
On a separate note - My daughter often gets sore throats. She even had her tonsils removed at age 5 (which was a big improvement) but she continues to get regular sore throats which seem to correlate with heightened sensitivity issues (socks, excessive wipping etc. Does anyone else find this?
D.
Jun 02, 2013
Rating
starstarstarstarstar 		tonsilitis - behavioural change
by: Nicky

My 5 year old contracted tonsilitis this week and has been really poorly, in the last two days her behaviour has changed so much I hardly recognise her, she is argumentative, antisocial, has mood swings up one minute very low the next, has heightened emotions, cannot be reasoned with. I have contacted a specialist and hoping for an appointment asap - the question is will they look into PANDAS as a possible diagnosis? I hope so, I hope they do it without my having to fight for it. And things had been going so well, the excessive wiping has gone completely for the moment. I will update on how I get on with the consultant.
x
May 31, 2013
Rating
starstarstarstarstar 		Powder
by: Anonymous

I have a question. What are y'all's thoughts on letting my daughter continue to use the powder? She is 5 & puts it on about 10 times a day. She will be starting school in August. Should I start making her cut back? It's the only thing that makes her feel better :(
May 31, 2013
Rating
starstarstarstarstar 		Thank you
by: Anonymous

I wrote in a few days ago & I'm looking into pandas for my 5 yr old daughter. She does everything that everyone has written about. Thank you for sharing about the powder. I did not realize her obsession with powder could be a tic. I let her use it whenever she wants for a little relief. Her bathroom floor is always covered in it. I guess we need to start working on that next. We are currently waiting on blood test results to check her levels of strep from her pediatrician. Praying we get some answers. To the lady that just wrote in with the 7 yr old. She has the same symptoms as my daughter. I suggest looking into pandas or pans that's where I seem to be finding some answers. Finding a pandas Dr is next. Thank you to everyone sharing their story. It's helping me a lot & gives my daughter comfort knowing she's not alone.
May 31, 2013
Rating
starstarstarstarstar 		Cont'd I have wetness issues
by: Anonymous

Over the last few years it has gotten slightly better. I can now go for short periods of time without using any powder. It got better for several reasons: I learned to eat healthier and exercise, which has helped my stress and anxiety (which affect my various tics and rituals, including powder use). Also, I met my boyfriend, who unknowingly forced me to work on my powder issue. Long story short, physical intimacy can become awkward when you have powder on. We couldn't be spontaneous since I would have to run to the bathroom to wipe the powder off! So I began to work on going for short periods of time without wearing any powder. Some times are easier than others.

I am trying to be as open and detailed as possible about my use of baby powder because although it may seem like a good solution to begin with, if you let it go unchecked, it can become another part of the obsession/ritual. I didn't think about how the long-term usage of powder would affect me...I didn't realize it would affect me so much.

****One other, very important thing to note is that I only use hypoallergenic, PURE CORNSTARCH baby power. Other powders that contain TALC may actually be very harmful, including possibly causing cervical/ovarian cancers.****

It is extremely hard to live a life where you have days when you feel stuck in your own body. I have had countless days where I would cry, just wanting to crawl out of my own skin. Fortunately, as I have gotten older I have learned that THIS is my body, for better or worse, and I have to accept that. I also know that there is much I enjoy in life, and even though my body gives me trouble sometimes, it also lets me live my life! The best advice I can offer to anyone struggling with issues like these is this: you may not be able to fix everything about your body, but you can make sure you keep it the healthiest it can be! Exercise isn't just about maintaining weight - its the best way to release tension and anxiety and helps SO SO MUCH!! Eating healthy is also extremely important. When I was younger, one of the (many) doctors I saw told my mom that what I ate had nothing to do with my OCD or tics...and yet she noticed that my tics got worse every time I ate something really sugary.

There is a lot more I wish I could share, but I don't want to make this post too much longer! I will say that, to all you mothers out there raising a child with OCD or tics or the like, you are all superwomen! Raising any child is hard work, but kids like myself can be extra tough. Don't give up hope. Teach your children to appreciate what their bodies CAN do for them. And most importantly, always always always take time to LAUGH and LOVE!
May 31, 2013
Rating
starstarstarstarstar 		I have wetness issues
by: Anonymous

I found this thread after a bit of google searching...I had no idea so many children have this issue with wetness! I deal with many of the same issues as the children described in these posts do. I would like to share my story, in hopes that it may help all the mothers out there struggling to help their children. I would like to warn readers that this will be a long post, but I hope you read through it all and find something that might help you or your child.

I'm a 23 year old female who was diagnosed at age 5 with OCD, at age 11 with Tourette's and sensory dysfunction, and at age 13-14 with social anxiety and depression. Sometimes I like to joke that I got the "value pack"!

I had "typical" OCD behaviour as a child, like arranging shoes and books in extremely orderly fashions. I hated wearing clothes, especially when I had to wear lots of layers, or when I was buckled up in the car seat. I was very fussy with what to eat and very particular about the ways in which I moved around (for example, when I was very little - according to my mom - I would never crawl on the grass...I always stayed on the picnic blanket). Later on, a doctor told my mom that I had a "sensory dysfunction". Basically, my body is very sensitive to sensory input - mainly touch - it can be very overwhelming. That's why I didn't like being bundled up - because my body was on 'sensory overload'. I was a picky eater because there were many textures (of food) that I could not tolerate.

Around age 12 I started having problems with wetness. The inside of my vagina was wet, and that was no problem. Rather, it was the wetness (whether real or imagined) around my labia that, for whatever reason, made me feel extremely uncomfortable and caused me a great deal of anxiety. One way I tried to deal with the issue was by pulling my underwear up really, really tightly, and rolling the excess fabric over my pants so that they stayed as tight as possible. Unfortunately, I hated the feeling of underwear and it was always a struggle to wear them.

Then I started using baby powder. It did help, but it also caused me many struggles. My mother is extremely sensitive to smells and if I used the powder and then had to be near her, she would get bad headaches. As well, both my mother and sister have asthma and the powder affected their breathing. Powder became a 'bandaid solution'. It has been over a decade since I started using powder and I have not been able to fully stop. When I have good days I can use just a little whenever I go to the washroom, but on bad days I will sometimes reapply powder 4 or 5 times before it feels 'right'. I carry a tiny bottle of baby powder in my purse everywhere I go, and I panic if I don't have it with me. Its a love-hate relationship...it helps me get through the day, but I wish I didn't have to use it.
May 30, 2013
Rating
starstarstarstarstar 		7-year old daughter always thinks she wet
by: Anonymous

I am reading your posts with some desperation, as my daughter, over the last few days in particular, has reached a point of very high anxiety over the fact that she "thinks" she is wet from urine. (She is bone dry.) She cries, nearly hyperventilates, and literally acts like she cannot tell the difference between wet and dry. This is a girl who is top of her class at school, very bright, very social, very involved in group activities, etc. She has no other sensory issues. When she was 5, she went through a stage, on and off, of wiping too much after urinating. This would flare up from time to time over the next couple of years, but this recent anxiety is something we've not seen before. She is afraid to get urine on her, and thinks it's disgusting. She washes her hands more than she should around this recent issue as well. She gets so worked up at the height of this mania (occurring more violently at night and in the morning) that she seems to see wetness where there isn't any. We'll feel her underwear, shorts, her legs, and tell her she is 100% dry, and she simply doesn't believe us. This evening, it took over an hour to get her to go to bed she was so beside herself with this anxiety. We have an appointment with her pediatrician in a few days, but I'm not sure how we'll get by until then, as it has gotten so bad. We do question whether or not this is some sort of attention-seeking or manipulative ploy, but she is an only child and already gets considerable attention.

She has never been abused and is an otherwise happy, healthy child. It has been breaking my heart to see her suffer through this, so any advice would be appreciated.
May 26, 2013
Rating
starstarstarstarstar 		Response to last post
by: Anonymous

To the lady that just commented.. Call me and I will help you. My daughter did this very same thing and everything is better now. I wish it would not have taken 6 years to find an answer though. Email me and I'll send you my number.. Crhodes7@comcast.net I'm candi..
May 26, 2013
Rating
starstarstarstarstar 		Excessive wiping
by: Anonymous

I am sitting here crying as I read all the comments. This is everything my 5yr old daughter does. We have had every test done. I have never heard of pandas but I am about to google. I cry daily over the issue & it is so hard going places & spending so much time in the bathroom. She is constantly grabbing herself & trying to make herself feel dry through her clothes. It's getting embarrassing & I am afraid kids will make fun of her when she starts school. She cries & begs to be taken yo the dr so she can feel better. its stressful & heartbreaking. I'm going to keep reading the comments & search for answers.
May 24, 2013
Rating
starstarstarstarstar 		Wiping
by: Nicky

Hi, I have posted twice before and wanted to give an update on dealing with the excessive wiping. I think that by telling your child it is perfectly ok to wipe lots of times if their body is feeling like it needs it helps to improve the situation. My daughter would be in tears regularly at the frustration that she had to keep going back to the toilet and wipe again and again. my reassurance that we know the feeling passes from past experience and that sometimes our bodies have this feeling and all we can do is what our body needs and let it pass has calmed the situation. I know I keep saying "be calm" but it really does seem to work. There is nothing worse than seeing your child so upset and frustrated and if your being calm can help them to relax and deal with what their body is throwing at them then it is an improvement. My daughter recently came to find me and told me proudly that she had just only used two pieces of toilet paper when wiping.
May 24, 2013
Rating
starstarstarstarstar 		Thank you
by: Anonymous

I have read many of these posts and am at such a relief that I am going through much of the exact situations. Not knowing how to deal with it,but staying calm is best, 4year old daughter, not knowing what to do and what I do fails making things worse, but worst of all my sweet baby girl is suffering it and I am unable to help her.

I am confused: is it a phase or strep and/or Lyme disease.
Thanks for sharing I do feel like I can be helpful now.
May 13, 2013
Rating
starstarstarstarstar 		Excessive wiping and socks, shoes...
by: Anonymous

I have written here before, my daughter started excessive wiping a while back and we have days when it is better and some when it is a complete nightmare. She has had scans and urine tests and all clear. Knowing that there was nothing evidently wrong put my mind at ease and also speaking with a child psychologist about her other issues - problems with seams, sock and shoes, leggings,cuffs etc.. I have learnt that my reaction to the behaviour either calms or exacerbates it. It is difficult not to get stressed, worried, upset by my daughters behaviour however I have found that a calm approach and a reassurance that everything will be ok and not worrying that half a loo roll is used in one sitting, the situation has improved. I appreciate that for anyone who has experienced what I experience with my daughter, staying calm is sometimes really tough but it really does seem to help. I spoke to the doctor about PANDAS as the symptoms of those diagnosed seemed to fit exactly with my daughters behaviour. I have had a referral to a specialist however as we are going through a better time at the moment I am yet to see anyone as I don't want to remind her of the issues. we saw a child psychologist about the sock and shoe behaviour and this helped both my daughter and I deal with this better. The excessive wiping continues but she no longer wipes herself until she is sore. Mornings and evening (i.e. tiredness) seem to be the worse times and she definitely has the dripping sensation more then. We have occasional times where she feels the needs to go to the toilet every ten minutes and literally does a few drips - i am not sure what is causing this but luckily this happens rarely now and we just try to deal with it calmly, accept her need to go and to wipe again and again until she is comfortable and it passes.
May 13, 2013
Rating
starstarstarstarstar 		Not sure what to do or think
by: Rachel

Everything here I am reading is what my 4 yr old is going through. My daughter has had a labial adhesion since 5 months old now all of a sudden she was closed up again last month. Since then her entire personality has changed. Her adhesion is cleared up but she now constantly says she has drips . She would cry and wipe herself constantly. She also will hold her uring bc she knows what will happen once she pees. I brought her back to the dr and they screened her urine which showed high levels of protein and also traces of blood. They gave me something for a yeast infection to see if it helps. They sent her urine out for a full analysis so now it's a waiting game. She has now started having issues with shoes socks and underwear I feel like this has completely changed our day to day lives.
Apr 01, 2013
Rating
starstarstarstarstar 		Excessive Wiping
by: Anonymous

I wrote a comment on here a few weeks back. Tried a few suggestions that were posted & still no joy. Last week my daughter wiped that hard because she still felt wet, that she cut her privates. I noticed blood on her tissue paper & was horrified when i checked her down below. This, however, has shocked her into not doing it so hard & so often now because of the stinging from the cut when she peed. She was is pain. It's so sad to see my child like this & also sad to here of others like it. I can only hope that this is the end for us or that they all grow out of this soon. Don't know what else to try, other than to seek medical help now, if it continues.
Mar 31, 2013
Rating
starstarstarstarstar 		Daughter Complains of Dripping
by: Anonymous

My daughter complains that she is dripping after she pees and needs to return to the washroom to wipe again. She is getting really frustrated but I do not believe that she is actually dripping and that it is just a sensation. She says its dropping or tingles. I haven't read any concrete reason for this. She is not in pain or having any other symptoms. Sometime she complains that her tummy hurts but she does hold her bladder a long time. She also does consistently have a bowel movement everyday. Could anyone give a reason for this Complaint from my daughter, also could this be pin worm>however no complains of anal itching etc.???????????
Mar 24, 2013
Rating
starstarstarstarstar 		Progress with excessive wiping and other
by: Anonymous

Thank you for the posts that included info on pandas! I believed I needed to rule out medical before assuming it was all behavior so we went to the Dr to test for UTI or bladder infection. I was shocked when the Dr looked in her throat and said it was a little red. I had strep two weeks before and it was going around the preschool. Tested and she was positive for strep. Way too coincidental that I' d just read about this. She started amoxicillin and in just a few days she was symptom free! No extra wiping at all, no c/o dripping , no more rages, and no more fighting over how her pants and socks "don't feel right". She did not have any "typical" symptoms that I Woolf associate with strep. I know this won't be the answer for everyone but I will immediately get her chrcked for strep if she starts these behaviors again or even if someone around her has strep!
Mar 24, 2013
Rating
starstarstarstarstar 		To the latest poster
by: Lymie Mom

It HAS gotten so much better for us! Diagnosis and treatment for chronic Lyme Disease has made all the difference for our daughter. The treatments themselves and reactions that result have not been easy, but they have been so worth it to see her improve. We never struggle with wiping, tag, shoe, pants, sock or bathroom issues anymore. Keep seeking answers and don't stop.
Mar 24, 2013
Rating
starstarstarstarstar 		Wiping, socks, shoes, cuffs...
by: Anonymous

My daughter is 4 and excessive wiping is the latest in a string of odd behaviour. We have had stress with shoes, socks and clothing for the past 18 months but the wiping is much more recent. We have been to a psychotherapist who concluded it was a phase that would pass. My daughter can be an incredibly outgoing, intelligent and beautiful child but the stress she experiences when getting dressed and going to the toilet makes me worry she has a serious problem. It is incredibly hard to manage, especially as there are occasions when clothes go on without an issue and the promise of a toy reward miraculously stops the issues. This is by no means a regular cure though and often nothing works and it takes us both to end up in tears for the stress to pass. It is a comfort that other children experience this I just wish I could read somewhere how to deal with it or even that it gets better. All threads just seem to acknowledge it and offer support to fellow sufferers. I'm struggling with it, I'm so sad to see her getting so stressed, we would like to have another baby but right now I'm not sure I'm doing that well with the one I have.
Mar 06, 2013
Rating
starstarstarstarstar 		Pandas
by: Anonymous

Dr Rosario Trifiletti in New Jersey is a leading dr in PANDAS.
Google him. I live in Virginia and had a phone consultation with him which is what lead us to find out my daughter had Lyme. I am the original poster of this thread. And thanks to this doctor I finally had some answers. Lymes disease triggered the pandas symptoms in my daughter. Although still not perfect, my daughter has been flair up free for a long time. If the strep is what is causing your daughters symptoms she will be put on antibiotics for a while. Please find someone who believes in PANDAS and take your daughter to them. You have done a great job in finding a possible cause. Keep going. You sound close to a solution and some relief for your daughter. Good luck!!
Mar 06, 2013
Rating
starstarstarstarstar 		Excessive wiping
by: Anonymous

I' m writing again to share an update - the "dripping" behavior and wiping continues. My daughter is so distressed that she has avoided peeing for more than 24 hours. I took her to the Dr -I was able to get a urine sample at home and it is fine. I was surprised to find out though that she has strep! I am very curious about something I read before about pandas- does anyone have more experience with this? Also, I would love to know what the OT says as the wearing pants and socks is getting worse.
Mar 06, 2013
Rating
starstarstarstarstar 		Obssesion with being wet
by: Anonymous

My daughter as well became obssesive with being wet even though she is completely dry. She always used to wipe a lot after going to the bathroom, but it has gotten worse the past few weeks. She cries, yells and refuses to wear underwear or pants as they bother her. She is constantly touching the area trying to get "rid" of the wetness. I saw her Pediatrician yesterday and she is fine. No infections. She is also refusing to wear socks as they bother her as well. I contacted an OT in my area and she will see her hopefully next week. It breaks our hearts to not being able to help her. Apart from that she is a happy vibrant little girl. Please keep posting your comments and updates so we can all share what is helping our girls. Thank you all for sharing your stories. All the best.
Mar 01, 2013
Rating
starstarstarstarstar 		anxiety
by: Anonymous

After reading many of these comments, I noticed that several included other comfort issues and that some contributors recommended the weighted blanket. I looked into that to see that it is recommended for many anxiety issues. This, and the fact that tiredness can be a factor in this condition got me thinking.

It occurred to me that lately we've been having a lot of stressful situations at home. I have often been tired and frustrated by bedtime and the children have, I think, heard more than they needed to. I think kids often get too much information and this can cause insecurity and anxiety. They need to know that they are safe and loved and should only be held accountable for that which is age appropriate for them (picking up their things and the like).

After thinking about this I went to her room to visit with her. She was interested to know that it's a common condition and she had some ideas of her own to share. Then I reminded her how blessed we are to have one another and that God is taking good care of us so she doesn't need to worry about anything. Before long she was giggling and then peacefully ready to sleep.

I'm going to take time throughout the day to read the Bible and be more balanced in my own life so I can be more careful in helping the children feel secure and peaceful.
Feb 25, 2013
Rating
starstarstarstarstar 		Excessive wiping help
by: Anonymous

I'm thankful to get everyone's ideas! I'm resolved not to let this be so traumatic for my daughter. I did forbid her from continuing to wipe after she went potty. She cried and cried but "got over it". Well then she held her pee and didn't go for 18hours. I have had to make her at least sit on the potty and try, but couldn't make her go. She said she didn't want to go b/c she would "drip". Soooo, I'm encouraging her to try to pee and if she drips she can have a little more tissue to wipe or hold it to hold the drips in. I can't imagine what is going on in her mind. We're using distraction methods and we played I Spy- she liked that. I hadn't mentioned her pickiness with clothes- she just changes a lot! I just have to make sure we have plenty of time when we're going somewhere and stategically avoid the potty in public . I know that a key is letting her feel some control.
Feb 25, 2013
Rating
starstarstarstarstar 		my daughter
by: melissa

My daughter now 7 has had the issue of non stop wiping since she was 3 or 4. I have taken her to the Dr. And she didnt have a infection or anything. She says she has pee drops. Their is nothing there. The Dr put her on a med and that made it worse. We are still dealing this. Im so glad to see we are not alone. She will even want to get out of the bathtub because she thinks she is having pee drops. My daughter as well has to have her pants tight at the waist with a belt and pulled up so high it looks like it hurts. She also has to have her socks a certain way. She prefers not to wear any at all. I just dont know why she is having these potty issues.
Feb 24, 2013
Rating
starstarstarstarstar 		Not alone
by: Anonymous

Awwwr thank the lord that i'm not alone!! My daughter has the same problems. Excessive HARD wiping after the toilet, spending ex amounts of time in the toilet too, constantly complaining that she needs to go again, straight after having been. Also the clothing not feeling right, socks have to be pulled right up before she puts on her shoes. She hates tights, leggings, etc & as soon as she gets into the house from school or going out, everything has 2 be stripped off & she is only comfortable in a onesie, nothing else. she has gone from wearing knickers right inside her bottom & her privates, (like thongs but in the front, as well as the back) to the extreme of not being able to pull these up any more. I thought to resolve this matter by buying micro fibre girls boxer shorts, hoping that this would be kinder 4 her but now she has done the opposite & pulls them right dwn, as to not touch her in that area. Getting her to sit properly in the car is also an issue because her knickers have to be a certain way when she sits & she has constant tantrums. Public toilets r a nightmare, embarrassing even, especially when she has an episode & when she pulls her boxers dwn, so she can't walk properly. I feel people are constantly staring at us & I am at my wits end now, don't know what else to do. Any advice would be hugely appreciated. Thanks.
Kind regards xx
Feb 19, 2013
Rating
starstarstarstarstar 		You're not alone!
by: Anonymous

Hi,
I just read the latest post and I just wanted to say you're not alone. From age 4 1/2 my daughter has spent a huge amount of time wipping! It started off with long waits on the toilet and then feeling like she needs to 'go again'. I remember vividly the day she went to bathroom over 20 times ... from then it was constant wiping and 'feeling-wet'. My daughter is now 6 1/2 and she still has episodes of feeling wet but she is generally much better.
I found distraction was the best method at the beginning. I used to have to get her into the bathroom 20 minutes before we had to leave for school just so we wouldn't be late. We would try with a timer ...singing songs ... playing eyespy ... even a game on the iphone ... anything to take her mind off the wetness.

I have no idea if this is what you are 'meant' to do but we had slow improvement with this.
I had spoken with her pediatrician about this many times - with no real success. I am now keeping a diary - writing down mood, what she eats, even the weather to try to find out if any external influence may be contributing.
In saying all this she is remarkably better than she was. Im not sure what helped - which i know must be frustrating to read! I think distraction, patience and time have perhaps been the biggest help. But definitely lots of rest, exercise and water! I found when she was tired her concentration on wiping increased. Also, i can tell when she is coming down with a cold - she will spend much more time in the bathroom! so we make sure she gets lost of rest, lots of exercise and healthy food.

She still doesn't like public bathrooms, but nowhere near as badly as before. I know she has some sensory issues - particularly with socks, long pants etc... so we are going to see someone at the Centre for Developing Children as I have been advised that a weighted blanket may be able to help.

I will let you know how that goes next week! Hang in there!
Feb 18, 2013
Rating
starstarstarstarstar 		Excessive wiping
by: Anonymous

I am having the same problem. My daughter pees and after she gets up and pulls up her panties she will pull them back down and say she is dripping. She'll continue to tear off pieces of toilet paper, wipe, throw away the tissue and start all over. She is not wet at all-I have tried to show her but she says yes it is. When she does come out of the bathroom she'll only be out a minute before she goes back in to wipe. This happens a few times before she is finally done. Going to the bathroom in public is a nightmare! I don't know if this is sensory, physical or psychological! The hardest part is when it brings her to tears because she thinks she is done and then cries that she is still dripping. I am ashamed to say sometimes I get mad about it and just tell her to stop it. I consider myself well educated and informed and have tried all of the logical solutions. This defies logic. I'm now being casual about it, gave her a limit on the amount of tp she uses so she can't use up a whole roll and am strategic about toileting and outings. She goes to preschool 3mornings a week and never uses the potty at school! I don't know anyone who has experienced this with their kids and I feel alone.
Feb 12, 2013
Rating
starstarstarstarstar 		Obsession w dryness
by: Anonymous

My 41/2 yr old granddaughter has developed this same problem. After reading some of the responses here & googling additional research we are trying the following. One week ago we took her to the dr for sleep issues. The dr suggested trying miralax because she seemed to be a little constipated. So we did & that problem cleared up & this one started. After reading other info we r hoping that the miralax is the culprit.
Jan 01, 2013
Rating
starstarstarstarstar 		Weighted blanket and more
by: Heather

Ok, I have been gone from this site for many months, so sorry. We are now living in China. My daughter is now 7, on Concerta, and frequently using Triple paste to keep her bottom dry. The weighted blanket...... A miracle!!!!!!!!!
Dec 31, 2012
Rating
starstarstarstarstar 		me to
by: kristina w

Hello i have that happen to me all the time im 12 also and every time i drink chocolate milk i go to the restroom and my privates part feels wet i dont do anything but wipe my self i didnt get checked though but id recommend u go to a doctor



Dec 27, 2012
Rating
starstarstarstarstar 		Bedets
by: Anonymous

I have to think that at least in some of the cases I've read, it may have to do with diet. I've had this for a long time and in my case, it is wet. I've read that hormonal changes can cause women to dribble a little. I'm wondering if because of diet, that's not what's affecting younger people. It really is an awful feeling-you think you're done and then you have to go back again. It's a drag. I may try the gluten free diet and see if it helps. I think bedets can help a little. I tried one of those and I like them. They rinse you off at the temp you want. They're not like they are portayed in movies at all-they have handles like a faucet to where you adjust the temp and strength of the water and you sit on it and it rinses you off. It helped me.
Dec 10, 2012
Rating
starstarstarstarstar 		Agree
by: Lymie Mom

I agree with Been There. Lyme treatment by a Lyme literate doctor, as well as the required diet changes (gluten, dairy and sugar free) are what helped my daughter.
Dec 10, 2012
Rating
starstarstarstarstar 		Been there
by: Anonymous

Yes, we had some success with OT. My daughter is now 12. Please read through this thread and see what people have done. My daughter had Lyme which I assume she had for 3 years before diagnosis and lead to this OCD behavior. She is not perfect but has not had a flair up in 3 years since we had the extensive antibiotic therapy. I do believe the Lyme triggered PANDAS symptoms in her. Go to as many doctors as you have to until someone listens. I went to my pediatrician for two years with her blaming this on my daughter wanting attention. I finally diagnosed her myself as having pandas and found an expert in pandas ( a neurologist) and he tested for Lyme and strep and other things . She came back positive for Lyme and that was probably the route of my daughters problem. Then I had to find a Lyme literate doctor. This process was exhausting, time consuming and painful to watch as my daughter struggled.! Good Luck to you and your daughter!
Dec 10, 2012
Rating
starstarstarstarstar 		Same thing
by: Sam's mom

I am going through this right now with my 4 1/2 year old. It started with shoes. Then socks. Sometimes pants and underwear too. But we have always found a compromise and worked through it. Now it is the constant wiping. I can't find a compromise for that. The biggest problem is that she doesn't like how it feels and she wipes and wipes and then throws fits. An hour later she is fine.... Until she has to go to the bathroom again. It has become a problem at school and a problem whenever we go out. My doctor said that it is a sensory processing disorder and I should consider OT. Anyone having luck going down that road?
Dec 09, 2012
Rating
starstarstarstarstar 		Help!
by: Rondo

My 16 year old daughter has the same issue. Can use a half a roll of toilet tissue at one sitting. What is the solution? Therapy is going no where. Medical issues have been ruled out. She can spend an hour in the bathroom. Help before I make myself crazy with guilt.
Oct 26, 2012
Rating
starstarstarstarstar 		Really?
by: Anonymous

I found this page in efforts to solve this problem myself- I am 23 and have the same issues. I'm commenting solely to assure the moms here that aren't tagging me as having psychological issues, that the problem is real. If upon pulling up underwear and looking again, moisture can be SEEN, odds are your children aren't just looking for attention.
Sep 24, 2012
Rating
starstarstarstarstar 		same problem
by: Anonymous

I have been dealing with this for about 5 months and was so delighted to see that I am not the only one. We are going to go down the non dairy and gluten path and see how we do. I am about to lose it so very glad to find this site..
Sep 07, 2012
Rating
starstarstarstarstar 		Follow up
by: Single mom 3yr old

We have now been Glutten Free since the end of July and have had wonderful success! The excessive wiping has cut back considerably and potty time is fun again. She sometimes feels wet but it is often after eating at restaurants where cross contamination can occur.

She still hates wearing socks and sometimes asks if she doesn’t have to wear her panties to bed at night; that bit of relief and control makes her feel better and we avoid the battles and angst that ensue if pushed. In the grand scheme of things socks and wearing underwear to bed are minuscule, why fight.

I would be very interested to set up a local group to support and discuss with other Mom’s who share these challenges I know how heartbreaking and difficult it can be and also believe Dr's should take a better look at this. So if anyone lives in the DFW area and would like to chat, please email me at: withoutlimits_kd@yahoo.com. Hugs to each of you.
Sep 05, 2012
Rating
starstarstarstarstar 		Disconfort in children
by: Anonymous

I'd suggest child psychiatrist, I believe that these are not the organic disorders. But surely they are real and cause discomfort. Would be appropriate to disclose the existence of this disorder in many children, so that research can study the actual causes.
Sep 04, 2012
Rating
starstarstarstarstar 		My butt's wet!
by: Megan

My daughter is 5 years old. For at least 12 months or so she has said that her "butt is wet." She has gone from one extreme to the other that it bothers her. Right now it is an issue. She will hold toilet paper in that area then cross her legs. She changes her panties multiple times -- I have checked them and not feel any wetness. I have also tried explaining that it is normal to be a little wet. Then she will constantly touch the area where the pee comes out...she calls this her "bean" which is a term I believe a classmate she had called it.

She also has started throwing fits over how her shoes fit. She constantly states that her clothes are not "comfortable" or that things in her hair are not "comfortable."

I want to cry everytime she starts in on the "butt is wet" tantrum. She is obviously feeling uncomfortable and I cannot seem to help her. Her pediatrician said she looks good. I am thinking of taking her to a urologist, but may look in to this SPD a little further. I am relieved in some ways that we are not the only ones going through this!
Sep 04, 2012
Rating
starstarstarstarstar 		urination disorder
by: Anonymous

This post urination disorder in girls, I think should be reported and deepened by the medical point of view neuropsychiatric child. As it is common, and is often associated with autism spectrum disorders. Logical reasoning for suggesting a defect in the neuropsychiatric system.
Sep 03, 2012
Rating
starstarstarstarstar 		after urination disconfort
by: Anonymous

I understand you and I can confirm the same problem on my child over this disorder, she have also other sensory issues and food selectivity. For now have a diagnosis pdd-nos.da check in time evolution. I noticed that stress and anxiety worsen the disorder, but improves a little with age. wishes to you all ..
Sep 03, 2012
Rating
starstarstarstarstar 		excessive wiping
by: Anonymous

Please help me with this....My daughter also is always scratching her privates because they itch/tickle. She also goes to the bathroom frequently for excessive wiping. This has been an issue since kindergarten and she is now in 5th grade. I have tried everything. She is diagnosed ADHD and has many sensory issues, but this particular tic is so frustrating for her and for me as I see the way it socially impedes her life.
Aug 31, 2012
Rating
starstarstarstarstar 		*
by: Anonymous

At 20 she should be able to clearly explain this to a doctor who can help her.
Aug 31, 2012
Rating
starstarstarstarstar 		my 22 year old daughter
by: Anonymous

I have a ee year old daughter who was always picky about tags on clothes, her sock seams just right, her shoes, underware, etc. At a teen she anounced that she was a lesbian and has continued to act as that. At approx. Age 20 she began obcessively wiping her vagina claiming she cannot ever keep it dry enough. I have explained to her that the vagina is supposed to be wet. She continues and goees through a tremendous amount of toliet paper. Any other mothers experience at all like our's?
Aug 30, 2012
Rating
starstarstarstarstar 		My 5 year old has the same!!
by: Chantelle

My 5 year old daughter has also been ecessively wiping after she goes potty, it has been going on for over one year. I have not taken her to the doctor, because she has NEVER complained about anything at all!! She doesn't think there is anything wrong. I ask her why she wipes so much, she even walks around for hours with a rag between her legs. She explains it to me stating "i have bubbles all the time". The rag that she has between her legs is completely dry! BUT she feels she needs it or has to wipe more.

I am reluctant to take her to the doctor, for i do not want to make it a big deal!! But now she is in first grade and she cannot walk around with a rag between her legs, so i am trying to figure out how to make it go away!
Aug 12, 2012
Rating
starstarstarstarstar 		Wow, Us too!
by: Anonymous

I am thankful to have found this thread. I have a 6yr old daughter who is also going through this problem with excessive wiping. It developed shortly after she went through a period of going to the bathroom VERY frequently. That went on for a couple months. Then her teacher confirmed what I already thought was excessive, I immediately took her in to be tested for Diabetes. The test was negative and the Dr told me that she had "confused" her muscles and that if she practiced holding her pee in longer it would retrain her muscles. We worked on this a bit and it did improve and as soon as that seemed to right itself, the excessive wiping started. Now the frequency of going to the bathroom is normal, but the wiping goes on for sometimes 5 mins.

I have tried to not make it a big deal, then tried talking to her about it, and I have tried explaining that her body might be changing and that women are supposed to have moisture inside there. She just keeps insisting that I dont know because I dont feel whats in her body.

She also has been having alot of what we call a "clothing crisis." Picky about socks and underwear... Whining that they arent the one she wants or that they dont feel right. When I try to get an answer from her about what exactly doesnt feel right, she doesnt seem to be able to explain it, just alot of whining...Then I get frustrated and we head into battles. Sometime it seems as though she is uncomfortable, but at least half of the time, she seems to have a crisis, just about choosing something before she has even put anything on. Or, she will whine and complain that something doesnt feel good, but that she wants to wear it, so she doesnt know what to do. I am trying so hard to be calm and patient, but after so many times calmly trying to give her choices and help her through these things, I just finally snap, and then I get very stern with her. Then she cries and tells me I am mean. Ugh.

She has always been a child that is very smart and sweet and I have always been able to talk things through with her logically and rationally. I have become sooo frustrated that I cant seem to work this out with her.

We are both so tired and frustrated with each other, and I have been feeling so bad/guilty about how much this seems to have come between us. She has become very short tempered and angry with me, and it breaks my heart.

I was relieved to find this thread and read about everyone's experiences. At the same time, my heart sank to hear how long some people have been dealing with this. We are headed to her 6yr old checkup next week and I will be discussing all this with the Dr. I am so glad to have heard about the Lyme Disease & Strep/Pandas issues and that I can discuss this with the Dr.

More than anything, I just want to help get her/us through this and reclaim my relationship with her and not be battling everyday. Thanks everyone.
Aug 06, 2012
Rating
starstarstarstarstar 		My 5 year old is the same
by: Anonymous

What a relief as a mother to see that I am not alone! I had no idea that anyone else was experiencing the very same issues that we do. I have not been able to explain that it's okay for the area to feel wet. The comparison to the mouth is perfect! Two separate pediatricians have mentioned SPD as a possible reason for several of her issues. I am afraid to focus on it because I do not want to make it worse. After reading these posts, I may change my mind. THANK YOU for being honest everyone!!!!!
Jul 29, 2012
Rating
starstarstarstarstar 		ENT surgery child - part 2
by: Anonymous

In response to the last post, my 4 year old also had terrible constipation as a toddler. She had a Celiac antibody and it was negative. I too considered the Lyme possibility in both her and myself but I could not find a doctor I trusted not to under or over diagnose. AND it is getting better, so I didn't want to go down that road. If it gets worse, I will take her to someone. I am also suspecting Celiac or a non- celiac gluten sensitivity in myself, so this is something to consider for my little girl. Thanks.
Jul 26, 2012
Rating
starstarstarstarstar 		Greatest find
by: Single mom 3yr old

This was incredibly comforting and helpful. I too have been frustrated by Dr.s treating me like an overreactive mother.

My 3 1/2 yr. old daughter has had tummy troubles including constipation that sent us to the emergency room. This lead us to testing for Celiacs. I took her off gluten and was having great results until a recently when she ingested glutten. I have found info relating gluten protein to urinary issues. Then I remembered I found a deer tick on my person sometime before her symptoms started. I should have her tested for lyme which has never been done.

We are going back on strict glutten free and call the Dr. To test for Lyme. Thanks all, we are at the beginning of this I fear and I'm both saddened and glad to find what others have or still going through.
Jul 24, 2012
Rating
starstarstarstarstar 		We have had this problem
by: Anonymous

After out 4 year old had a minor ENT surgery for ear tubes, she started having this problem constantly feeling wet. It was always worse in public bathrooms and she would just scream bloody murder. It would happen at home too such that she would want to put on a pull-up to feel drier. The problem has gotten better and I assume it was triggered by the anesthesia. It improved when I stopped arguing with her and acknowledged that she felt wet. One day, she said, "I feel wet, but am not going to think about that now." she can now get distracted. I suspect a mild SPD, but ,hopefully the worst is behind us.
Jul 11, 2012
Rating
starstarstarstarstar 		I am glad that we not alone
by: Alyona

My daughter (7year old) also going to the bathroom and wiping a lot, and she uses a lot of toilet paper. Also she feels wet, when she doesn't. She fears that she'll get cancer or heart disease. She worries about a lot of thing that could happen to her. She started to be afraid of ants, germs and other things.
And I noticed she could be very irritable over small things, her hair not perfect, or her clothes has a spot.

I don't know what to think. I making a dairy about her feelings and symptoms.
I will wait until August, if nothing will change, I'll take her to the Doctor.
Jun 12, 2012
Rating
starstarstarstarstar 		My comments
by: Anonymous

My daughter experienced the exact thing.
I didn't give up on her because it seem to be really aweful for her. Come to find out she was diagnosed with OCD and went on meds. She is doing great! Get her check for OCD and go from there.

Hope this helps
Jun 10, 2012
Rating
starstarstarstarstar 		I have this problem as an adult
by: Anonymous

I don't have any infections, and my bladder is not leaking... but almost every time after I urinate, and wipe, I still have soaked underwear. I pat dry as best as I can and when I think all is well, I walk away and come back within minutes. It's like this all day long. I used to wear pantiliners, but I had gotten a few infections due to sweating or prolonged wear on busy days. Cotton underwear does nothing for me, but I continue cotton anyway because they absorb better. Wish there was something else I could do! My doctor suggested it was my hormones that just caused me to be wet all the time.
May 25, 2012
Rating
starstarstarstarstar 		respose to post hands problems
by: Anonymous

I can witness a similar situation in my family, the girl in question is on the autistic spectrum. She had a period when no longer wanted to use his hands because he said they were dirty, would not even eat with their hands. It was a phobia, due to his problematic neurological development. Often has other phobias, although of lesser importance. The problem of wet after urination is discontinuous and alternate with other disorders.
May 23, 2012
Rating
starstarstarstarstar 		Please rule out infection first
by: Anonymous

Hi everyone. Just wanted to plead with all the loving, caring parents out there to please have your children checked for possible infections (strep, mycoplasma, Lyme disease, candida, etc.) before or while being treated by psychiatrists/psychologists. I too am open to consider all possibilities. I just want to offer some support and encouragement to all you parents out there with these beautiful children that struggle. We are their advocates!! They rely on us to get them the best possible help available today. There are children who suffer with infections that may be negative on tests because they are immunocomprimised. Those that suspect Lyme...please read "Cure Unknown". Seek out respected DAN (defeat autism now) dr. In your area. There is an Autism Now conference in Lombard, Illinois this week. Check out the lectures. Please refrain from labeling your child and question every specialist that does. What is the root cause...and then treat it. Pray for guidance. There is so much hope...hang in there!! And please remember to take care of yourselves too. Go for a walk, talk to a friend, anything that will help you cope with the stress. We are modeling daily on how our children deal with stress.
May 22, 2012
Rating
starstarstarstarstar 		My daughter is going through this right now along with obsessivly washing her hands
by: Anonymous

My daughter is also claiming that after she uses the bathroom, her pee area still feels wet and feels she needs to wipe again. She says her underwear gets wet and constantly changes her underwear at school. Compounded with this constant feeling of wetness in her genital area, she has been obsessively washing her hands claiming that they are dirty. She walks around with her hands in the air so that she doesn't touch anything and then has a fit when our dog brushes by her. I tried to keep her from washing her hands but she then had a huge meltdown that she needed to wash her hands. She then made excuses that she needed to cool off her hands. On top of this, she says she is unhappy. All this in a 6 year old girl. I am worried, but my wife thinks that maybe her body is going through some changes (explaining the wet feeling in her genitals) and also, our son has been changing and demanding my attention more, and that maybe she wants me attention. I have read other blogs saying that she may be washing her hands to deal with some anxiety. We went through this hand washing thing a little over a year ago, but she got over it. Now, it has come back again. I am getting a little worried, but my wife doesn't seem to be.
May 19, 2012
Rating
starstarstarstarstar 		So thankful ! ;)
by: Anonymous

Curious if the weighted blanket helped with the excessive wiping in private area?? Or any other suggestions!'?? Open for any help!! ;)
May 19, 2012
Rating
starstarstarstarstar 		I agree !
by: Anonymous

I agree with the previous poster!!! To bad most doctors brush it off. It would be great to have a real medical doctor read this thread and do a study on it!!!! With the number of desperate people who stumble across this thread, I tend to think there are many more families dealing with this!
May 19, 2012
Rating
starstarstarstarstar 		after urination disconfort
by: Anonymous

All these posts with testimonials from parents of children with similar problems. Should be a topic of study in child psychiatry. to investigate the causes of neurological disorder and the location at the end of the diagnosis. too much because this disorder will affect their adult life.
May 18, 2012
Rating
starstarstarstarstar 		;) thankful for u all!!!
by: Anonymous

My 4yr old daughter has been diagnosed with spd. And has recently refussed to wear underwear hates any thing on her bottom area. She says she is wet in her private area she wipes constanly keeps her hand on her private area it overwhelms her!!! I asked her ot if this was a sensory thing she said she didn know. I was so lost till I googled it an found this page!!! I'm going to try everythin an continue to seek help!!! Thank you ALL for your post you can not image how much hope u all give me!!!! God bless you all!!! ;)
May 18, 2012
Rating
starstarstarstarstar 		Thank you
by: Anonymous

I think that the testimony of girl Aspergers, is very useful for a reflection on the causes of the disorder.Thank you and greeting.
May 18, 2012
Rating
starstarstar 		Sounds like me when i was young...
by: Anonymous

I am a girl and i have asperger's. always needed socks and shoes a certain way, still do. cant wear certain fabrics,foods... etc etc. but i always remember when i was young and my mom would take me to go pee i would be wiping and she would get really worried looking and say "stop wiping so hard! that's enough!" But i had to wipe inside my outer labia to feel clean. but i think this has caused some problems. now i am in my 20's and its really sensitive down there. i try to just dab at it but it annoys me because it doesn't feel like I've soaked up all the excess pee and think it will get on my underwear and i will smell like pee. maybe this is what she is thinking also. I'd take her to a doctor and see if what she is doing is potentially harming her vulva.
May 16, 2012
Rating
starstarstarstarstar 		after urination disconfort
by: Anonymous

Very useful all the testimony. This disturbance of the wet after urination, in the case of my little girl is related to sensory disturbances related to ASD.Ho noticed as anxiety exacerbates the problem, and it attenuates the tranquility. I believe that the different neurological development is the primary cause of the disorder.
May 15, 2012
Rating
starstarstarstarstar 		Updates and advice
by: Anonymous

I am always telling my daughter "your private parts are wet". I have great news: my daughter has been using a heavy weighted blanket along with occ. therapy and counseling It has made a world of difference. I highly recommend the weighted blankets. We bought ours on etsy. We still have imany symptoms of SPD but they half been lessened in severity. Has anyone had experience with hair pulling? My daughter is pulling out her eyelashes and eyebrows. Thanks!
May 15, 2012
Rating
starstarstarstarstar 		Helping my daughter understand what's normal by: Anonymous
by: Anonymous

Props to your obvious advice! Honestly, it never occured to me that my daughter may not even realize that that inner area SHOULD be wet! After I made an appointment to visit the Doctor for what I anticipated as a series of visits to specialists etc. I read your post about maybe your daughter not even realizing that her inside should be moist! I asked my daughter if that was what she was talking about, and she said yes. I told her that like the inside of her mouth, that area should be wet as long as it wasnt dripping out. And she looked at me and said OH! Problem solved. Crisis Averted! Shaking my head at not even thinking of that!!!
Thanks so much!
Apr 16, 2012
Rating
starstarstarstarstar 		an update on please help!
by: Heather

We got a final eval back from neuropsychiatrist that diagnosed my daughter with ADHD. She also said to watch out for bipolar as well. In school, my daughter is having difficulty paying attention. She tells me she hears voices. Recently, she has developed many OCD habits and worries excessively. In 2 days we go to a specialist for meds. As of right now, we have seen 2 psychiatrist, 1 psychologist, a immunologist/pediatrician, currently see a therapist, waiting for a call from the ot (had an eval and yes diagnosed as spd too), and we have an appt with a developmental pediatrician/psychiatrist. Wow! I think we have finally found a good fit for her. I have tried elimination diet but not gluten free. I am ready to try this. Thanks so much!!!!!!!Hugs to all!!!!!!!
Apr 16, 2012
Rating
starstarstarstarstar 		Asperger's
by: Anonymous

Please have your child see a psychologist. This could be a trait of Asperger's. It is likely a sensory issue going on. My son would spend hours drying himself after a shower (literally)because he insisted he was still wet. He also will use almost a whole roll of toilet paper after a bowel movement to get clean enough. Please google Asperger's and look it up if you are not familiar with it and see if your child has any other traits. My child has been diagnosed with Aperger's anxiety and we have been told several times throughout our long process of testing that often children are often mis-diagnosed with ADHD first (which was true in our case - though is now considered Aperger's with co-morbidities of ADHD and anxiety)and it isn't until they are a bit older (7-9) that the true diagnosis of Asperger's is gotten. The earlier you get the diagnosis the better as there are Occupation Therapists that can work with kids to de-sensitize them from external stimuli (many kids are bothered by smells, textures, lights flashing, tags on shirts, etc)
Mar 30, 2012
Rating
starstarstarstarstar 		Please help me!
by: Heather

Hello all. What a miracle to have found this thread! My daughter is 6 1/2. Since birth, she has been intense. Since a few months of age she has had major constipation issues uti issues. Currently she does not wear underwear. However, she complains that her bottom is sticky and wet! We have gone to medical professionals galore, therapists, etc. They seem to think I am crazy!!!!!!!!!!!!!!!! She is a little hyperactive and has been diagnosed as ADHD and has some anxiety. Anyone had luck with medication and diet? We live in Iowa.
Mar 22, 2012
Rating
starstarstarstarstar 		Diet and sleep may help
by: Anonymous

Hello, wow! I thought we were alone on this one. Here's our story : my daughter had trouble with constipation since birth and she had lots of symptoms of SPD. It took us 3 years to learn about diet so we changed her diet to gluten-free and casein-free. Thankfully her bowel troubles improved almost overnight and surprisingly she no longer had Symptoms of SPD! Our daughter is 6 1/2 years old now.

Well we just spent March break traveling and while we tried to keep her on her diet we did eat out at restaurants. Her symptoms of constant wiping have returned after 3 years. Perhaps she was accidentally glutined? Or, she did have many late nights. I read on this thread that tiredness can cause this. Or, ironically, we've returned back to unseasonably warm weather. Perhaps it is the change of seasons that someone else mentioned? She's gone to bed early tonight. And tomorrow when she wakes up, I'll let her know that she's not alone. I'll mention the gluten, the weather, and the seasons to her and we'll do our own "science experiment" to see if we can figure what caused this relapse. We'll get to bed early for a few nights and really keep a close eye on her diet and the weather. I know I felt better to know we're not alone. I'm sure she will too. Good luck to all of you!
Mar 20, 2012
Rating
starstarstarstarstar 		Original poster
by: Anonymous

Get her checked for Lyme and strep (PANDAS). Especially PANDASif this was sudden onset. I would first get her checked for. Urinary tract infection, but that did not seem to b the problem wih most of us on here. Read through the comments on his thread. There are many of our daughters dealing with this. After 3years of undiagnosed Lyme disease and 1year of antibiotics my daughter is back to almost normal. She has been flare up free for 1.5 years. I wish someone had suggested Lyme to me when this all started. Lyme can cause OCD behaviors it does not hav to be the typical symptoms. Also, your pediatrician will most likely tell you this is a phase and she is fine. Basically blaming your daughter. Go till you get answers! It took a neurologist to finally listen to me and get her tested. Good luck and fight till you get answers!
Mar 20, 2012
Rating
starstarstarstarstar 		glad I'm not the only one...
by: Anonymous

My daughter just began with the excessive wiping after urination claiming she's not dry enough......should I be concerned?
Mar 13, 2012
Rating
starstarstarstarstar 		Everyone should investigate PANDAS
by: Anonymous

I think everyone should read up on PANDAS (pediatric autoimmune neuropsychiatric disorder associated with strep). A good resource is the pandas network online also check out the book "Saving Sammy" by Beth Maloney. It's in most libraries. A great Dr. To consult if you suspect your child may have Pandas is to contact Dr. Rosario Trifiletti in New Jersey. My daughter was just diagnosed and is responding to treatment. There is hope.
Mar 04, 2012
Rating
starstarstarstarstar 		Excessive wiping and fussiness with socks
by: Anonymous

I cannot believe I came upon these comments! We have been going through the excessive wiping and constant fighting with socks on and off for about 2 years. Originally I thought the wiping problem meant she had a uti bc she used to have kidney reflux (she grew out of the reflux, thank God), but the uti tests were negative. She stopped the wiping problem for a little bit but now it's back. My daughter just turned 5 and goes for her physical in a couple weeks. I'm anxious to talk to get dr about the sensory info I read on this thread. I hope I can get her the help she needs especially bc I hate seeing her upset over these things.
Feb 20, 2012
Rating
starstarstarstarstar 		My little girl too
by: Jill

I can't believe I stumbled onto this thread. My daughter is 7 1/2 and had lots of different OCD type tendencies. She has had them since babyhood. She used to need to have a blank piece of white paper at bedtime and it couldn't have a crinkle in it or she'd freak out. Her latest has been the wet undies thing. She says it's uncomfortable and has fidgeted enough to rub herself somewhat raw. She's taking baking soda baths now and we are using hydrocortizone cream, but we are going to start prozac soon (my son is on prozac for anxiety disorder and it runs in my family). Anyway, I'm glad to see she's not alone. She's an amazing little girl!
Feb 13, 2012
Rating
starstarstarstarstar 		To New Dad Poster
by: Lymie Mom

It would depend on what her test results reveal as to what medications they treat with. Co-infections may be treated first with different meds. Rifampin is sometimes used for Ehrlichia, Amoxicillan is one choice for treating Lyme, Babesia is treated with malaria meds. Has your daughter also been tested for systemic yeast? A candida infection can be caused after antibiotic use and has been linked to some sensory issues in some children. Common medications to treat candida are nystatin, diflucan, and probiotics.
Feb 13, 2012
Rating
starstarstarstarstar 		update
by: Anonymous

Thanks for the test kit advice. I have one on order. May I ask what medication was used to treat the lymes? I was told Amoxicillian would be used. My daughter has had strep in past month or two where she was on medications. We didn't notice a change in her after taking Amoxicillian.

Drawing straws but not giving up!
Feb 10, 2012
Rating
starstarstarstarstar 		To New Dad Poster
by: Lymie Mom

Hi to the new poster. I'm so sorry your child is struggling with these issues too. I'm the mom who has Lyme and phased it on to my girl. Just wanted you to know that it's best to order a Lyme test kit from IGenex Lab in Palo Alto, CA, and have your local lab do the draw, then send it to CA for review, to get the most accurate results. Lyme testing in general labs is not as sensitive and can miss stuff. Additionally, she should also be tested for co-infections which can cause similar symptoms to LD. Also, it's best to have the results read by a lyme-literate physician. Contact your local lyme disease association for a referral.

My daughter's sensory issues have been improving dramatically since beginning treatment for Lyme Disease and Co-infections. I hope you find the answers you need.

We did the OT brush therapy for a while too. Didn't really fix the problem. I hope you have better results with the new therapy.
Feb 10, 2012
Rating
starstarstarstarstar 		I need Advice PLEASE
by: Anonymous

Hi, first time poster. I'm a father of a 5 year old daughter with this exact condition. My daughters excessive wiping started roughly 6 months ago. She has a lot of other issues like Type 1 Diabetes, Thyroid problems and now this. This site has gotten my daughter to an OT for about 2 months now. She wouldn't wear socks, underwear, tight clothing or jeans. She wanted boots with fur, soft on the inside with no socks, sweat pants with fleece feeling inside and "cozy" shirts and of course the bathroom issue carrying toilet paper in pockets at all times. To Date, she will not go to the bathroom at school ONLY AT HOME!

That brings me to reading more on this site. I see the original poster mentions getting tested for Lymes/pandas. The day I read that I picked up my kids and went straight to the walk in clinic to have the lymes test. NOTE TO OTHER PARENTS: The walk in clinic was upset cause I came to them instead of my daughters NORMAL DR.

My advice to others dealing with this: the few things the OT has tried and has helped for short time results is, a small plastic brush with medium to soft bristles and brush your Childs arms, hands, legs, feet and back for about two minutes 3 times a day. That worked for a short time but now what is working, after the child urinates, we wrap her tightly in a blanket (I use a furry fleece "cozy" blanket") and use a big exercise rubber ball. Have the child lay down on her tummy in the blanket and roll the ball from head to toe several times. For some reason this helps. I do have a feeling it will be short lived but is working for now.
Feb 03, 2012
Rating
starstarstarstarstar 		Another excessive wiper
by: Anonymous

Thanks everyone! count me in as belonging to the "mother of a young child who insists upon carrying a roll of tp with her as she she too can't shake the feeling she's not sufficiently dry" As if we don't have enough to worry about, let's add this obscure neuroses to the list! I am so glad I found this and can't actually believe that I did! I never really thought of her as having SP issues but I'm beginning to.. we live in Hawaii and can't go to the beach due to that darned sand that like to settle between her toes (?!?!?) I thought these behaviors were my four year old's annoying personality quirks. Thanks for the enlightenment!
Jan 18, 2012
Rating
starstarstarstarstar 		Excessive wiping and OCD
by: Anonymous

My son is 71/2 and began struggling with excessive wiping a year ago. He would spend a great deal of time in the bathroom wiping until he felt clean as many as 100 wipes at one point. He exhibited anxiety and difficulty falling asleep. We began CBT with a fantastic therapist and he immediately showed progress, goal setting was a big part of it but first was the naming of the frustration or unwanted thoughts. This is part of CBT where a person gives it a name and then basically sets out to not let that ""whatever they named it beat them! We are huge believers in cognitive behavioral therapy now. At the height of my son's frustration last year he had some depressive thoughts as well,down on himself would be a good way to describe it. Always a great student that never waive red. He was diagnosed with anxiety and some OCD. But, I now really believe he has sensory issues as well. He doesn't like jeans, socks bother him and recently wearing gloves while skiing bothered him. Sleep is so important if we are vacationing and he is getting to bed late he can slip into a long wiping session and end up in tears. Truly believe in adequate sleep as a proactive measure. Thoughts?
Jan 18, 2012
Rating
starstarstarstarstar 		Glad to find this post
by: Anonymous

I too am relieved to find a post with similar stories. I have a 6 year old daughter who is constantly saying she is wet and wiping so much. She is also picky about socks and lines in clothing so after reading this I'm glad it's not abnormal and others are going through this. I am going to call today to make a doctor appointment but I am also going to try to explain how the labia is suppose to be moist to see if this helps. So glad this article was out there.
Dec 27, 2011
Rating
starstarstarstarstar 		OCD or SPD?
by: Anonymous

Thanks a lot, very useful your observation and testimony. is difficult to place the issue of whether it wet,is OCD,or SPD, although others coexisting hypersensitivity related to SPD.Regards
Dec 24, 2011
Rating
starstarstarstarstar 		Helping my daughter understand what's normal
by: Anonymous

I had dealt with the same issue for over a year with my 5 yr old daughter; she had always complained about "dripping" and being too wet, and insisting on wearing toilet paper in her underwear all the time (night and day). Then one day I was in the bathroom with her, and she kept wiping over and over and complaining, saying that "it never gets dry". I realized then that she didn't know that it's supposed to be moist inside her labia. Once I explained this to her, all of our issues went away!

I found this website about a year ago, and it helped me commiserate. I wanted to come back and share my story in case it might help other parents. I realize that every child is different, and every issue is different. Some kids may suffer more with a sensory problem and some with OCD. And I can tell you that my 5 yr old suffers a little bit of everything. I've gone through 8 different brands of socks to find something that's comfortable!

Anyway, this "solved" our problem, and I hope it might help another family. Best of luck to everyone!
Dec 17, 2011
Rating
starstarstarstarstar 		my girl....
by: Anonymous

Wow i cant believe i found this by simply googling "6year old feeling wet underwear"!! as most of you have, i also have a six year old daughter whom we have struggled with since a very young age with her different quirks. mostly we deal with excessive tantrums, she has a diagnosis of ADD but we know there is more to it then that.
the excessive wiping and worrying about having an accident is actually fairly new but VERY frustrating. she will go to the bathroom 5-6 times before going to bed...just in case. and we constantly battle with her wanting to keep toilet paper in her pants so she isnt wet. this seemed bizarre to me until i found this page...our therapist suggested it was a sensory processing disorder and now i am definitely seeing how it comes into play. i am definitely going to use the pantyliner idea to help her cope with this, thanks!!!
Dec 04, 2011
Rating
starstarstarstarstar 		Original poster
by: Anonymous

Lymie Mom, I think you have searched and found your daughters problem and relief to her problems! I am the one whose daughter had Lyme for a couple of yets and was never tested until a neurologist suggested it. Lyme can present in these OCD symptoms and most doctors do not recognize this. I have been told the symptoms can flare when starting treatment so that sounds normal. My daughter has not had a flare up in over a year and we are hopeful. But she had Lyme for so long that it could flare at anytime. She is not perfect, but she can function and is doing well.
Good for you! Doctors sometimes do not listen to Moms and brush these behaviors off as a phase. It is sad.
Good luck to you and your daughter! Keep us posted!
Dec 04, 2011
Rating
starstarstarstarstar 		Lyme as a cause
by: Lymie Mom

I was diagnosed with Lyme Disease 6 months after my daughter was born. Because Lyme can cross the placenta, my daughter was treated, prophelactically, with antibiotics for four months just in case I'd transmitted it to her. As she's grown, her sensory issues, from age 2 to 4, have escalated. Excessive wiping, constantly fidgeting with undies, complaining of wedgies when her undies are at her ankles, no jeans, phantom wrinkles in socks, feeling like she can't get her hands dry after washing, tantruming if she can't pull a perfect square of toilet paper and it rips at an odd angle, wanting to fold towels a certain way, hating tights, needing a certain side of her blankets facing her skin. Finally, she started having seizures. Febrile at first, and now ones that are not fever induced. After having tested repeatedly for UTI (which she never has), strep (negative) & treating for candida we have taken her back to a lyme doctor. She has just started treatment. I am hopeful we are on the right track because her symptoms flared 5 days after being back on the antibiotic...at the time when dhe should be in toxic overload from a herx reaction Iif lyme bacteria are dying as a result of the medications. I'll try to remember to keep this site posted as to her progress.

Pediatricians kept telling me this was normal preschooler behavior, or possibly OCD. Her immunologist and my maternal instinct keep us on a path for answers.
Nov 25, 2011
Rating
starstarstarstarstar 		Ipersensibility and frustations
by: Anonymous

Hello, your story is very similar to mine. they are two girls with wet feeling after urination, with hypersensitivity to various odors flavors clothes shoes, fail to recognize adequately the temperature climate as well as the food, they also have extreme food selectivity. I also noticed the fluctuation In daily worsening of their sensitivity and in some seasons. their Have frustrations. I state that physical examinations were negative. I submitted the case to physicians and pediatricians are not answered. After a long time I made ​​reference to the structure of child neuropsychiatry. After an assessment of the girls considered PDD-NOS, the causes. I believe that all experiences can be useful to reflect. Greetings to all children and families
Nov 25, 2011
Rating
starstarstarstarstar 		This all sounds so familiar ...
by: Anonymous

Hi to everyone, As i read all these comments i can see so many similarities. I have a six year old daughter who has recently started wiping excessively. I took her to our new pediatrician last week to check for a UTI. It came back negative but she did have concentrated urine. the DR. advised her to drink more water and to take a warm bath each night (no soap).

Having read all these posts I am now thinking we should investigate further. I will take her back and rule out Lymes disease and also the possibility of PANDAS. There have been sensitivity issues for a while ... but they have been inconsistent. Socks and leggings have been the most difficult although she now insists on wearing white cotton socks to bed - so we continue with this as it seems to make wearing socks in the day much easier. Leggings pose a problem so she continues to wear summer dresses year-round.

I am very interested to hear more about success stories! I have found that her 'obsessive' actions fluctuate at different times, but Im not sure what impacts her behaviour.

I have even read that a change in seasons can affect sensitivity disorders. We were at a fair one day and i had to take her to the bathroom 31 times over a 4 hour period. School posed a new set of difficulties for her. She would go to the bathroom before we left home and then again just before class started ... she would tell me 'just in case... I have to hang on till I get home". This phase ended when we moved to another country (hence another school). But i did learn that she had an 'accident' at school one day and was terribly embarrassed. She has other 'quirky' routines such as certain toys she must sit on her bed at night, a certain blanket that she needs to touch constantly etc. But these seem to range in severity and I cant really work out what increases her compulsive actions.

I have found that distraction works the best when trying to deter these compulsions. But I am unsure how to deal with the excessive wiping. We are trying to stay positive and encourage her to trust us that she is 'dry' but we spend so much time in the bathroom! It is hardest when we have to be somewhere at a certain time. Im wondering if there is something we can do to help her now. I am presuming that we start with her pediatrician but then where? Anyhow, I am just to thankful to have found all your comments. Im hoping this is the first step forward -
Best of luck to you all,
Nov 23, 2011
Rating
starstarstarstarstar 		Children problems
by: Anonymous

Thank you Candi for your testimony that I share with you. I know how difficult it is for a mom to see the discomfort in your child, observing his difficulty in doing things that are easy for children. We must also fight for the misunderstanding of many people. Thank you for your sensitivity and willingness to make suggestions. Best wishes for your family.
Nov 23, 2011
Rating
starstarstarstarstar 		constantly rearranging underwear
by: Candi

I am so happy I found this site. I have felt so alone with trying to find out what is going on with my baby girl. She is 9 years old and has battled this since kindergarten. My poor baby even had a surgery done to remove extra skin that could contribute to the "bubbling sensation" is what she calls her frustration. Anyway, when she is preoccupied with a movie or video game she rarely is scratching or rearranging her underwear. We just got back from Disney and I just felt so bad for her because it was constant. I know she wants to be like all the other boys and girls that can just enjoy themselves. I recently even took her out of school and home school her because of the bullying she was getting. After reading all of your posts, I feel like there is hope for my daughter and she will one day be able to manage better with these tics. I am thankful for this site and hope that by writing this I am helping another mother/family know they are not alone. Please email me with any questions or support. crhodes7@comcast.net
Nov 22, 2011
Rating
starstarstarstarstar 		We're in this together!
by: Rai

My daughter is almost 11, and we've been dealing with this since she was just a couple of years old. The good news is I know exactly where to get seamless socks, I buy leggings by the dozen (no jeans in this house!) and I prepare for her long bathroom routines. I like the pantiliner post, I am definitely going to try this. I think it will help her quite a bit as her anxiety becomes quite bad when she's feeling "wet". *sigh* I'm certain she has SPD and mild OCD but am not comfortable putting her on Prozac with her starting puberty. I was advised that it can be difficult as her hormones flucuate. Some days are really tough. With all of the puberty talk in school and her seeing her own body change, she's become OBSESSED with the human body and confesses to staring at women's breasts or the pants on a man. She tells me she feels terrible for doing it, but is so curious about what her body is going to look like, and what a boy's body is going to turn into. This is highly disturbing to me, and I'm not quite sure how to process this yet. For now, I tell her that's it's perfectly normal to be curious, but rude to stare at someone's privates. I don't know how to curb her curiousity here; talking about changes and such isn't helping much. Hopefully, our DR will have some better ideas for me.

To the rest of you dealing with these issues, the hardest part is accepting that this isn't a choice for these kids, it's an actual disorder. We need to reassure them and help them find a level of comfort. A few extra sheets-or rolls in some cases!- of toilet paper or a few minutes with a blow drier (I love that!) is worth it if it helps your little one find a sense of peace. Stay strong!! :)
Nov 18, 2011
Rating
starstarstarstarstar 		SPD?
by: Anonymous

We have two girls with the same problem of wet, but they have other sensory impairments and unjustified frustration and anger and problems with food. Were considered on the autism spectrum disorder . I hope that my writing could be useful to some of you.
Nov 14, 2011
Rating
starstarstarstarstar 		Confused mom
by: Anonymous

My daughter has recently started school and previously has been through a short spell of selective mutism (now resolved). The new issue now seems to be feeling like she needs to pee after having already been and saying she still feels like she is dribbling in her panties - though bone dry. After reading this thread I am unsure whether this could be a physical or psychological problem? Other than this she would appear not to have any other symptoms posted, though she does spend a lot of time fiddling with her underwear. I am trying to understand but feel confused with what is the best way to proceed. After 6 months battling with the selective mutism issues I am frightened of drawing too much attention to this!
Nov 11, 2011
Rating
starstarstarstarstar 		So greatful for the info
by: Anonymous

Hi my 5 year old has started the same thing with the not feeling dry after toileting she is also going into rages because she keeps saying there is something stuck in my bum I have a wedgie even when she has no underwear on I have done all the usual worming and giving her parifin for constipation to rule out those things a few weeks ago my teenage daughters friend had hit her head and it was bleeding my 5 year old after seeing this spent 3 weeks asking us is my face ok is my neck ok is my body ok this went on 24 /7 then suddenly stopped then the other day I had her go into a rage because she thought she had hair all over body and there was nothing there then she thought she had something sticky on her back and again nothing there I had a doctors appointment to take her to and we started the process of getting her dressed as soon as she put her underwear and shorts on they sat the wrong way and she went into full rage and ripped all her clothes off destroyed her room and was screaming in frustration about what to wear the gp automatically said asperges but she is the opposite in so many ways she is highly emotional and makes emotional connections with people she is definatly not withdrawn and is all over the place rather than repetitive she is very forthcoming with telling people what she thinks of them she shows alot of empathy towards her siblings if they hurt themselves or are upset she is also very affectionate I myself suffer from adhd and anxiety and in regards to the PANDAS when I was pregnant with her I was never tested for the strep B bacteria but with my last baby who is 5 months old I was tested for it at 31 weeks at the same time they did a feotal fibronectin test because he threatened to come early I tested positive for strep B so im wondering if I carried the bacteria through my pregnancy with her and being a vaginal delivery its possible it crossed to her she is also pouring cold water on her vagina in the bath and wiping with baby wipes even when she hasnt been to the toilet its so upsetting to see her so uncomfortable and upset im seeing a different doctor on monday and I have written down every behaviour she exhibits and the disorders they are related too I dont want her to be misdiagnosed because its easier I was told I had bipolar disorder all my life and no medications worked it was a constant struggle and I was properly diagnosed 2 years ago at the age of 31 and I finally know what its like to feel normal I only wish more people took the time to get to the bottom of my problem so im going to insist every option is looked at I thank all of you so much for sharing your lives and struggles on here it has given me so much information I needed to get help for my daughter
Nov 04, 2011
Rating
starstarstarstarstar 		Pandas part 2
by: original poster

I strongly agree with what the last poster wrote. I had written about this in past comments. My daughter is the one that had undiagnosed lymes disease and these OCD symptoms. My daughters Lyme doctor said that not just strep can cause the PANDAS symptoms and that Lyme can cause it too. My daughter did not have typical Lyme symptoms. I thought they were crazy when it was suggested to test her. So we think her symtoms were a result of the lyme. We are able to control flare ups now with antibiotics, but you should get your children tested (blood tested) for strep and lyme. Antibiotics can help to reduce or take away this behavior. My daughter is not as she was before all of this, but we ahve not had a flare up in over a year and it is wonderful!!! Good Luck! Keep seeking the answers for your child. This is not normal behavior. My first doctor brushed it off and blamed my daughter for 2 years before I went elsewhere and got answers. The Neurologist finally figured it out.
Nov 04, 2011
Rating
starstarstarstarstar 		PANDAS
by: Anonymous

My daughter had this exact issue. Eventually things snowballed and it got worse, and more issues were added. This can actually be OCD.

Pandas is pediatric autoimmune neuropsychiatric disorder associated with streptococcus.

Have your daughter tested for strep, and do some research on pandas. Not all doctors are knowledgeable or believers- you will need to find an expert in order to get an accurate evaluation.

If it is pandas, the good news is that antibiotics and immunotherapy in conjunction with therapy can rid your daughter of this, along with many of her sensory issues.

Good luck!
Nov 03, 2011
Rating
starstarstarstarstar 		tanks
by: Anonymous

Many thanks to all of you for your willingness to post with tips and experiences. Do we feel less alone. good luck
Nov 03, 2011
Rating
starstarstarstarstar 		Excessive wiping
by: Anonymous

Read all the posts and hopefully you will find some help. My daughter went thru this also. We now count the wipes and we are down to three. When she comes out of the bathroom we cheer and tell her great job. I'll say wow that was so much faster then yesterday and this seems to work. Also I gave her pads which really helps. I buy the small thin ones and it makes her feel more confident. But I will tell you and it took me awhile to believe this, this obsessing will go away and they tend then pick a new obsession. We started with wearing the same outfit everyday when she was little, then to underwear never fits right, then I think im going to throw up,to wiping! Good luck! It's hard and stressful. Just try to find a award system that works for you. I had tried it all including telling her I'd put a TV. In her room if she would stop and I don't think kids need tv's in their rooms but I was desperate . Well that didn't even get her to stop! But counting and stickers did! I couldn't believe a tv she was like whatever but stickers get her off the toilet!
Nov 03, 2011
Rating
starstarstarstarstar 		disconfort after urination
by: Anonymous

Thanks for posting your experience, it made me reflect on this anxiety, which could be the cause of wetness after urination in girls. Apart from this site, I have not found any person who knew this problem. greetings
Oct 29, 2011
Rating
starstarstarstarstar 		Rest, Eat, and Play
by: Anonymous

This is for the kind lady who said she has sensory issues. I want to thank you so much for explaining to me how to handle my daughter when she is overwhelmed. Thank you this has helped tremendously. I don't know about the rest of the kids but for my child she gets overwhelmed when she needs to rest, eat, or release some energy and once I figure out which one it is I correct it before it gets to the feeling wet part and that has totally worked for me. Just like you said when your house is a mess you start to get overwhelmed and with my daughter when she has not played with any other kids or released some energy like running she gets overwhelmed and if I continue to let it go on for a few days then she starts to say her stomach hurts or she is wet. She gives all kinds of excuses because she does not know how to handle being so anxious. So everyone please monitor your kids because it does not just happen its a process that gets to this point of feeling wet and it can be avoided.
Oct 04, 2011
Rating
starstarstarstarstar 		Ask
by: Anonymous

In this site, we all have the same problem with the children but not the only one, because in addition to the wet conditions after urination. In my case and in others you add other sensory hypersensitivity, which vary in intensity on different days and in particular worse in the fall. Some of you said the most difficult times of the year? Given that sensory disturbances are often part of ASD diagnosis that they have done for your children? Thank you.And Greetings to all .
Sep 22, 2011
Rating
starstarstarstarstar 		Always feeling wet
by: Anonymous

I love this site! I am not alone. My daughter is seven and wipes non stop and drives me crazy with underwear doesn't feel tight enough. She ask all day, can underwear fall off? And why are my privates still wet. Here is what has helped me.
I use mini maxi pads, carefree seem the best they stay flat.

She wears them and says she is dryer which is so funny since she isn't even wet. But in her mind it helps and it is an inexpensive way to help her.
We count how many wipes she does. She was also plugging my toliets , so we started counting and everyday she did a little less wiping and I cheer and praise her. We are down to flit wipes verses the whole roll she was using.

I told her the more she wipes the wetter it gets and it will start hurting because she will make it sore and then we will have to see the dr.
Lastly I bought the total transformation , she is not defiant but her obsessing is hard to deal with and so frustrating. She was making all my kids late for school with the wiping and underwear drama!! Some days I would try reason and other days in would scream like a loon and I knew that I was not helping but it is just so stressful especially when you have other kids to care for. The total transformation has helped me big time!! Not to sound like a commercial but it has helped more then any dr. I have asked for help with her wiping and underwear drama.
Also let me tell you this started for me when she woke up screaming that her privates burned.
First her dr. Said nothing was wrong. After screaming for two days I took her to the ER. She had a yeast infection, so my
dr. Was wrong! But she has obsessively wiped for months
since.

So whatever your child's reason is remember Dr. Can make mistakes too! But also there is no reason for her to keep wiping like this, the yeast infection is long gone .
I hope this helps someone and thank all of you for making me feel not alone! Good luck
Aug 18, 2011
Rating
starstarstarstarstar 		My 6 year old son has wiping issues
by: Anonymous

my son has Asperger's and has been saying he has " a pee allergy" but he has been tested and does not have an infection. He will go to the bathroom excessively, spending 20-30 minutes standing in front of the toilet because he is afraid of "getting ee pee drops" on his underwear. A bowel movement will take 30-60 minutes to go and wipe. He will use half a roll of toilet paper and I tell him he is clean and I show him he will pull his pants up out of frustration and leave the bathroom. I try to limit his time in the bathroom and he will sneak into the other bathroom. I fear he won't be able to get though the school day,
Aug 08, 2011
Rating
starstarstarstarstar 		here we go again
by: mom of 3

I cannot believe that so many families are having to deal with these same issues that my family has been dealing with. My daughter now 5 ½ started these odd behaviors at around 2 years old. The behaviors always changing. Started out with excessive washing of her hands at 2 years old. Between age 3-4 it was the battle of the clothes. We have been to doctors, therapists and occupational therapists. She was doing great for almost a year now.

All of a sudden this wiping after the bathroom started. It is so hard to hear your baby cry for 30 minutes because she just can't get it dry enough. I just keep telling myself and her that we will get through this. I haven?t figured out my approach yet.

Here is what I have learned through therapists and through my own trial and error. You more than likely will not receive an official diagnosis. I was told they do not like to diagnosis small children as often they grow out of the behavior. I was told that often bright children are not able to express their emotions nor are they able to let us in to help them this is also something they will learn to cope with as they get older. I am already seeing a little of this. More than likely she has sensory problem. She displays this behavior especially when she is over tired (this is getting more and more difficult to recognize as she is getting older).

My suggestion is bed at 7:30-8:00pm and believe it or not nap or rest in the afternoon. Yes you can still get your 5 year old to take a rest and sometimes even a nap. I know it can be difficult but trust me you will see a huge difference! I have tried to use the brush on the arm prior to dressing but she didn?t like it so instead I would message her arms, legs and feet. She liked this while it didn?t work all the time it certainly cut down on our clothing battles. Other activities prior to difficult situations would be what they call ?heavy work? exercises. Things like pillow fights, rolling her up in a tight blanket, asking her to carry something heavy from one room to another. You will find tons of these on the internet.

For those parents with younger children (under 5) there may be some relief with the dressing issues. I found that at about 4 ½ my daughter become much easier to dress. Let them choose their clothes (It doesn?t really matter if they match they are still cute). I found that new clothing is difficult for her so sometimes I will force her to wear something new prior to the day she actually needs to wear it. Usually it will become her favorite outfit after the initial fight.

If anyone has any tips on dealing with the excessive wiping please post.
Aug 05, 2011
Rating
starstarstarstarstar 		Hypnotherapy
by: Melonaid

My daughter is just like all of yours...nice to know we are not alone! My 3.5 year old ha had issues since 22 months. It is strange because the issues always change. It started with hating certain clothes, which has intensified. Getting her dressed is often a battle, especially in the winter. Hates socks, pants, coats, etc. She has t o change if she gets the slightest bit wet or dirty. It is so frustrating!

She went through the always wet phase, I m happy to say sh grew out of it after a few months. Now she alway think she has a wedgie and she always has her hand in her under ware trying to fix it. I am hoping she outgrows this one too.

I have seen many doctors. All agree that there is nothing wrong with her and it is just a "phase" but it s so frustrating.

Has anyone tried hypnotherapy and has it worked?
Jul 21, 2011
Rating
starstarstarstarstar 		Thank you!
by: worried mom

I'm so happy to find this post! My daughter started this a week ago and I've been at my wits end about it. Now I'm thinking back to other things like there was a time she only wanted "soft" pants and getting underwear to fit right was a big issue for a while. I always thought it was anxiety as it only seemed to happen before going to school or an outing. She also has a thing about washing her hands very thoroughly and is always watching others to make sure they are keeping their hands clean. I thought maybe I had overdone the handwashing when she was little which caused it to escalate as she got older.

Although I'm a little sad to think she may have a sensory issue, it's also a bit of a relief to know it's something I can help her with. I was getting so frustrated with her and thinking she was just behaving badly. I'm anxious to read more and find ideas to help her.. Thanks again for your post!
Jun 21, 2011
Rating
starstarstarstarstar 		for i like to respond
by: Anonymous

Kind lady I feel much gratitude for your kind response and your advice. Thank you for your sensitivity and the good feeling, I wish you all the best for your life.
Jun 21, 2011
Rating
starstarstarstarstar 		Don't mind answering
by: Anonymous

I honestly don't think this issue has much to do with the actual urination at all. I think when our bodies our over stimulated and you get that overwhelming feelings that I was explaining. Our private area become so sensitive and I think especially as a child you just relate that to urination because that is all you know that can help that area. It is kind of hard to explain. They are trying anything to make the irritation go away. They don't get that it has to do with the whole body and if they can relax their nerves that will go away too. I had a rough adolescence. Although, I am 30 and didn't know this was all sensory related until a few years ago. So, I kind of was battling this stuff alone which I am sure made adolescence a little rougher. The best thing as they get older is for them to know their body and know how to use a sensory brush or go swimming or wrap up tight in a blanket when your body starts to feel un-easy. These kids are lucky to have parents aware of their sensory issues and be ready to help!
Jun 20, 2011
Rating
starstarstarstarstar 		Question
by: Anonymous

I would ask the nice lady available to give other answers. If at puberty with the beginning of the physiological cycle, had the same feelings of discomfort, or whether the disorder is exclusively limited to post-urination. Please excuse the personal question. But it would be useful to know to prepare our children. thanks
Jun 20, 2011
Rating
starstarstarstarstar 		Thank you
by: Anonymous

Thank you for your well explained as an adult experience. I agree with what you wrote. Even for my little girl there are good days and bad days, and I think that fatigue and stress, accentuate the problem. I am grateful to all the people who help with their testimony. Best regards
Jun 20, 2011
Rating
starstarstarstarstar 		Answer to flare ups
by: Been There

There are most definitely times when this issue flares up as to other days when everything is great! As an adult I am get the most flare ups when my house is a mess and I am overwhelmed, when I am stressed or too tired. I don't remember what triggered it as a child, but she probably flares up when her little body is overwhelmed or over stimulated. When you have sensory issues and your whole body becomes over stimulated, so does your private area. It is a similar feeling to being aroused. I am not trying to be graphic, but that is what it feels like. But, it is too much arousal. It becomes so sensitive and almost feels swollen and the feeling won't go away. I don't know if you own a sensory brush, but when she is feeling like this it would be a good time to brush arms or legs or lay under a weighted blanket. Just calm all the nerves in the body so her other area will calm too and not be so sensitive. I hope this helps. I don't mind answering other questions as well!
Jun 19, 2011
Rating
starstarstarstarstar 		for the person who has been there
by: Anonymous

This Question is for the person who says they have been there. I would like to know is this something that comes off and on like a flare up because there could be times when my child is fine but all of a sudden changes and she gets irritated by everything?
Jun 14, 2011
Rating
starstarstarstarstar 		I used to have that issue.
by: Been There

I am an adult with tons of sensory issues. I never realized I could have a type of disorder and I just found ways to deal with it. When I was a little girl I used a huge amount of toilet paper and wiped and wiped because it wasn't dry. My underwear never felt tight enough and it was too flimsy. My mom bought me boys underwear and this helped a ton. It fit so much tighter and more comfortable. You could always get white and sew a girly type ribbon on the band. I hope this helps a little. It definitely won't solve the entire issue.
Jun 12, 2011
Rating
starstarstarstarstar 		hands wet
by: Anonymous

Now my three year old is on a kick to where as her hands are wet so she washes them all day. I think they may feel sweaty because its been so hot and that bothers her. I don't know what to do here. People thinks I am crazy when I tell them the things I go through. I am so tired of this not being able to help her. I have been going through the crying since she was born and not knowing how to deal with this is nerve wrecking!

Agrivatedmom
Jun 05, 2011
Rating
starstarstarstarstar 		advice
by: Anonymous

In my child has been excluded as the cause of the disorder a urinary infection, no specialist was able to give a precise explanation of the disorder, she is on the autism spectrum and sensory disabilities. My case makes me think that the probdevelopmental abnormality neurologic.advice Board lem is associated with ASD and related to report to the pediatrician.
Jun 04, 2011
Rating
starstarstarstarstar 		in the same boat/toilet
by: HolyCow

my 4 year old too has been complaining that she is wet and wants to wipe all day long....panties are a fly'n everywhere....she changes constantly...clogging toilets too..but now i have her wiping and throwing the extra in the garbage. She wants to bathe all the time, which now i say shower....try to put bag balm on, but of course that is a wet feeling. Sometimes she's indicating her bottom part is hurting. Constantly drops her pants to her ankles and checks her underwear and spreads her butt cheeks....its out of control...frustrating. She will ask "Mom does your pee pee feel weird?" and "mom, did you just dribble?" and i try to agree with her and when i say i did dribble, lol, i'll say "did you just dribble?" and she says, "no." lol...i feel like a loser, jk....i am really glad to read im not the only one with this issue. I just hope its nothing more...i do plan on taking her into her pediatrician.
May 19, 2011
Rating
starstarstarstarstar 		thanks
by: Anonymous

Thanks! any experience or advice is useful and appreciated.
May 19, 2011
Rating
starstarstarstarstar 		Seasons and allergies
by: Anonymous

I have too noticed that it may be the change of seasons such as Autumn and Fall, which brings to my attention if it could be associated with allergies. I have been giving her a bath every night to wash off any pollen, dust, etc. I have also been washing her sheets more often and dusting to help her allergies and since I have been doing this I have noticed that she hasn't had a flare up. I will continue to monitor this and let you guys know if this helps.
May 17, 2011
Rating
starstarstarstarstar 		ypersensitivity
by: Anonymous

Hello Laura. my testimony concerns two sisters children with various sensory hypersensitivity including clothes shoes etc etc, and the problem of wetness after urination. What I have noticed that the symptoms are accentuated when they are anxious about something and are not at home when are tired, and during the change of seasons in autumn and spring. anyone who has advice will be welcome to all of us. thanks. marisa
May 16, 2011
Rating
starstarstarstarstar 		Love the internet
by: Laura

After reading all of your blogs, I feel so relieved to know there are so many of you out there who are going through the same thing. My daughter is now 8. She has always had small sensitivity issues. When she was young, she used to self hum to block out excessive noise. She still does this occasionally but over the years she has learned to recognize when she is going it and to stop. She has ALWAYS had clothing sensitivity. Jeans are a nightmare. I don't even buy them anymore. I struggled for a long time with letting her get away with what she wanted to wear. I mean if my mom bought me clothes, I wore them no questions asked! She wears sweatpants all winter and sweat shorts all summer. We should buy stock in gap clothes because to her they have the softest clothes.

Underwear is a nightmare! She pulls it all the way up her butt till "it feels right" and wipes excessively just like all of your little girls. Tonight she cried hysterically on the toilet for a long time because "I just can't get the wet off". I can't wait to try some of your suggestions. I am so glad that I found a site where there are people that understand and are going through it. Tonight I felt like such a bad mom because I don't know how to help her and I know most of the time I am insensitive to it. Looking forward to reading more.
May 08, 2011
Rating
starstarstarstarstar 		thank you
by: Anonymous

Thanks so much for your testimony. I'll keep into account to investigate. You were very kind.

It is really frustrating problem for girls and their families also because it is often mistaken for a fancy what for them is strong discomfort Best wishes for your child, and my regards.
May 07, 2011
Rating
starstarstarstarstar 		Original poster
by: Anonymous

The only diagnoses I have gotten has been the diagnosis of Lyme disease. I have posted about this before, but my daughter has been free of a flare up for a year. She was on antibiotics for 1 year and now off them and so far so good. We think she has Lyme for 4 years before this diagnosis. Not sure if the Lyme was related or just an additional problem, but the doctor said it could have been what was causing the symptoms. If a flare up happens again we will start the antibiotics back up. The doctor who recommended the testing was a neurologist. Everyone else told me nothing was wrong. From neurologist we went to a Lyme specialist.

Hope that you find your answers. This is frustrating for the child and family.
May 07, 2011
Rating
starstarstarstarstar 		diagnosis
by: Anonymous

Is there anyone on this site that had a real diagnosis for this disorder? I do the questions if this is connected to the SPD and the message arrives late at the end of urination or delay is filtered by the nervous system that remains for a few minutes the feeling of wet, or ASD is a disorder or OCD? who has had medical explanations? thanks
May 03, 2011
Rating
starstarstarstarstar 		Have the same problem!!
by: Lynn

I have a 3 year old daughter who has the same problem!! I have been searching the internet for weeks until I found this page!! I can't believe I am not alone. My daughter, now matter how many times she wipes after peeing... still says she feels wet and want to wipe again and again, even when she is no longer wet. She keeps clogging my toilets! Can't figure it out and thought I was alone. Great to find this!!!
Apr 14, 2011
Rating
starstarstarstarstar 		help for little gherl
by: Anonymous

have great understanding for children and parents, because as a parent I would like to live the same problems.I that all of our witnesses here described this real noise of our little girls were brought to the attention medical.if someone has means of access to and disclosure please .i ask also seek to disclose information about anyone with new info on the blog. thanks and best wishes to all.
Apr 14, 2011
Rating
starstarstarstarstar 		I feel your pain...
by: Tara

We are dealing with this too and I am so happy just to not feel alone (though I'm sorry others are dealing with it).

My daughter is nearly 6 and this "wet vagina" stuff has been happening for a couple months now. She has had some sensory issues as well including the uncomfortable socks, not wearing jeans, only wearing certain fabrics, only wearing certain shoes -- but we've been able to handle it fairly well.

This wiping business is so annoying though and it's really impacting our lives. I don't know what to do -- I am considering taking her to the doctor but I honestly don't believe there is anything physical going on. I think it's the sensory-monster rearing it's ugly head. I know for a fact she has NOT been abused in any way -- she is never out of our sight for one, and secondly, she tells us every detail of her life lol... which is a good thing I know...

I don't know what to do -- we've tried letting her wipe with cloth toilet paper (non-fraying velour pants I cut up into appx 3x3 inch squares -- we've tried just 'letting it go' and not making a big deal out of it at all... we've tried making bathroom "rules" such as she can only use 2 cloth pieces to wipe (one is big and absorbent enough for me to wipe so it's plenty for her to use 2)...We've tried talking to her about communicating to her body that she appreciates it sending her messeges but that this time the messages are getting confused (kind of like when you have a high fever but feel cold)... We tried explaining that her vagina/vulva is always supposed to be a tiny bit moist just like the inside of her cheek or her eyes so it doesn't dry out and get chapped...she seems to get it in theory, but to no avail on the behavior.

Now she's started wanting to change her underpants every time she's peed and it's ridiculous because they ARE NOT WET. I have felt them, they are BONE DRY. There is NO EVIDENCE of WETNESS AT ALL ... can you tell how frustrating it is for me? lol

We have always tried to parent gently and lovingly, we try to reason, talk it out, we try to be fair, we never have imposed harsh punishments or shamed her... I don't know where this is coming from other than the sensory issues. I am considering getting her tested for PANDAS. We are completely against medication (other than antibiotics if it were PANDAS).

It's kind of an embarrassing issue to deal with because you don't want to really tell a lot of people because they think you're off your rocker or that your kid has "issues". Thanks for letting me vent. I hope it gets better for everyone.
Apr 12, 2011
Rating
starstarstarstarstar 		wiping after urination
by: Anonymous

Omg I thought I was the only one going through this. this makes me feel so much better. My daughter started this when she was 2 and she is three now and it happens very often. Also she does not like to wear socks or shorts and pants. I think someone needs to give us some explanation on why this is happening because I don't know how much more I can take. Overall I am happy I found this site and maybe someone will find something that will help me cope with this.
Apr 12, 2011
Rating
starstarstarstarstar 		HOPE MEDICAL STUDIES
by: Anonymous

Hello My own girl has these problems since he was 5 years, now has 11 she also cried a lot did not want to go to the bathroom, but with growing awareness has learned to deal with this problem this way:
after very dry, leaves a lot of toilet paper folded in panties. The distraction helps calm and reassurance. We hope medical studies on this disorder. wishes for our children.
Apr 11, 2011
Rating
starstarstarstarstar 		My daughter also doing the same
by: Miami_mom

My 4 year old recently started doing the exact same thing. Her thing is she wants to dry herself with a towel because using toilet paper makes her feel like she's still wet. She will dry herself for about 2 minutes. At first, I wasn't too concerned but now it's an ongoing issue. Especially because she doesn't want to use the bathroom. I read a post below that their daughter started doing it after an incident. My daughter started soon after a "pee accident" during naptime at her daycare. I think she was embarrased. This morning I was telling her she needs to use toilet paper because she can't use towels when we go else where. She told me today that the kids call her "towel girl" at school. It broke my heart. Any thoughts on how to deal with this?
Apr 11, 2011
Rating
starstarstarstarstar 		Very Thanks
by: Anonymous

Madam, I am very grateful for having made available his knowledge and personal experience about my previous question. I think a lot of sensitivity in those who make available through their own experiences. Thank you very much.
Apr 10, 2011
Rating
starstarstarstarstar 		Diagnosis
by: Anonymous

I have experience as both a mother of a sensitive child and as a school psychologist. In both roles I have found that there are children who experience sensory processing difficulties as a situation on it's own or sensory processing difficulties in combination with other psychological or developmental disorders. Autism Spectrum Disorders and OCD are very serious disorders and have very specific diagnostic criteria. While excessive wiping can appear to be an obsessive or compulsive behavior it should not be considered a major piece of diagnosing OCD as there are other symptoms that should be identified. In ASD there are usually actual delays in many areas of development, particularly with social skills and communication skills. The delays are typically pervasive in low functioning autism and more moderate in higher levels of functioning such as Asperger's Syndrome. Sensory issues are just apiece of the puzzle. I work alongside many Occupational Therapists and many of their clients are receiving therapy to address sensory processing difficulties but not all clients have ASD and very few have OCD.
Apr 08, 2011
Rating
starstarstarstarstar 		diagnosisTRIVIA
by: Anonymous

If I may I would ask the lady with the title (in the same boat) if your child has a primary diagnosis that is the cause of SPD, such as ASD or other.because, even in my little girl as well as sensory issues. appear every few months new sintomi.rendering a difficult diagnosis. thanks
Apr 08, 2011
Rating
starstarstarstarstar 		SPD ASD OCD ?
by: Anonymous

I experience the same problem with my baby. 5 years have elapsed since the beginning of the disorder, nothing has changed. What puzzles me is that SPD does not appear in the list of this symptom. maybe it's part of ASD or OCD if someone more knowledgeable can give us some suggestions? Thanks to those who will give us an answer or advice.
Apr 08, 2011
Rating
starstarstarstarstar 		in the same boat
by: Anonymous

I've always believed there wasn't something right than the Dr. explained to me about sensory disorder and it made a lot of sense. She is seven now and for the last few months she will spend 20-30 minutes wiping her butt after peeing. So i'm glad to see i'm not the only one dealing with this. It's very frustrating but i try to keep cool. She also has issue with tags, socks with seams, shoes, underwear,pants wont wear blue jeans. Wrinkles in socks that i cant even see but she knows they are there. She is very smart told she is at the top of her class always bringing home a's. I just wish there was something i could do seems like every few months something new develops. She has wiped herself before so much she has bleed And im not sure if there is any danger in that or not. And my toilet is always clogged we now put it in the trash can ;) and some way i swear she folds one piece toilet paper 10 times. Has anyone ever had these issues to fade away? it seems when something new goes on all the old problems still here and it just adds up we will still have to take 20 mins for her to get socks on and i even have to take them off of her and pretend to fix them. thanks!
Mar 30, 2011
Rating
starstarstarstarstar 		Things somewhat improving
by: Anonymous

In the last few weeks this wiping issue has slightly improved. For starters I have majorly backed off and have given my 5 year old physical and emotional space to address her wiping needs. Secondly, after wiping to her satisfaction I have allowed her some panty-free time for additional "drying". I then notify her that she has to put underwear on when the cartoon is over or whatever activity is next on the agenda. Overall, these adjustments have taken the intensity down a couple of notches. She now struggles most when we have to use a public bathroom and there is little time to implement the earlier mentioned strategies. Sometimes having to speed through it distracts her from the issue but other times it increases her stress and she is fidgeting with her underwear for the next hour or so. Just thought I would update you on our situation (Frustrated mommy and daughter)
Mar 29, 2011
Rating
starstarstarstarstar 		ocd?
by: Anonymous

Yours is an interesting question for all of us who live the same problems.I hope and ask all people with similar experience to collaborate with suggestions. Thanks.
Mar 28, 2011
Rating
starstarstarstarstar 		Not alone
by: LVMom

Finding this website has made me feel like I am not alone. My 12 year old daughter got all weird about her socks and tags etc at about age 7 and also wore the same 2 outfits for about a year. Now the wiping and wetness issue is in full force and it is so frustrating to always have to unclog the toilet and wait for her to finish her "ritual" wiping every time she goes to the bathroom. She takes an antidepressant which has really helped with her many other OCD's but this one seems to have a hold on her. I am so afraid for when she gets her period. That is hard enough for a normal child, but how on earth will she handle it? Has anyone here experienced this yet?
Mar 25, 2011
Rating
starstarstarstarstar 		Hang in there!
by: Anonymous

My daughter, who is 8, has this issue as well. I believe that she is a little obsessive, like her Momma:) I also think there is nothing wrong, but that she is a little sensitive and in tune with her body(I am the same way). I told her that it is somewhat normal to have a little moisture and that she is doing a fine job wiping. I challenge her to stop at three wipes, so if she does four or five, then that is progress. I also just let her be and don't stand over her anymore. It is her thing that she needs to make peace with, so I can encourage, give options, support and make sure she is okay. When I mention going to the doctor, she gets nervous and doesn't complain for a while. For my daughter, I think it is a little OCD. I WILL NOT medicate her. I am trying to encourage her awareness and enlist behavior changes with giving her a certain amount of wipes to stick to. I also have explained that too much wiping could irritate her, so she could try patting dry instead. I also just hug her and tell her I know how frustrating it can be (I had some issues after delivering that have been corrected, so I feel her "pain"). I think she will be okay and if I ever feel the need, or if it escalates, then I will make a new plan.
Mar 24, 2011
Rating
starstarstarstarstar 		My daughter has the same problems
by: Anonymous

My daughter has MANY issues from wrinkles in her pants and tops to stuffing her underpants with toilet-paper after urinating. I mentioned it to her DR but the DR feels it's totally normal and not to worry. I certainly WOULD NOT MEDICATE her unless it was life threatening!! Children are quirky, perhaps ours are more than others but, don't freak out.
Mar 07, 2011
Rating
starstarstarstarstar 		Frustrated mommy and daughter
by: Anonymous

I feel so fortunate to have found this thread. a few months ago my 5 year old daughter began her first real episode of not feeling dry and required numerous underwear changes to feel comfortable. It finally subsided and in the words of another post we are in the midst of another flare up!!! It is much worse this time and she seems to be very frustrated with herself and this irritating sensation of wetness. Since very young she has shown other mild to moderate sensitivities but we never pursued any formal diagnoses. I am thinking of bringing her in to rule out a UTI but my intuition tells me that this is more related to sensory issues an that we will just have to ride this thing out! I really struggle with seeing her frustration and have a hard time concealing my frustration which always makes the situation much worse for us all. Tomorrow is a new day and I really plan on working on my own patience and compassion for her struggles.
Feb 17, 2011
Rating
starstarstarstarstar 		neurologic disorder?FIANCE
by: Anonymous

Hello from Italy thanks for your testimony. it is important to share experiences. a hug. marisa
Feb 15, 2011
Rating
starstarstarstarstar 		Been there..follow up
by: Anonymous

One year ago we were in wiping hell, now we are continuing to cope. My 9 year old daughter did the "wedge" for a while, and now goes commando. No flare ups since (fingers crossed). She wears only 2 outfits, only after she has stretched them out thoroughly, most of the time her pants are inside out, and her hair is always uncombed. I've gone beyond embarrassed, and am just so glad that she is such a likable student no one teases her at school. She has asked a million questions about getting her period, so I think she is mentally prepping for how she will cope with this. At this point I've just decided not to sweat the small stuff. I've already seen some positive effects of peer pressure, as lately the pants haven't been inside out, and this past week she has worn two new shirts from the closet!

So breathe..we are all going thru this, no amount of hoping will make our kids "normal", we just gotta love them the way they are & help them thru as best we can. And lots of breathing! By the way, my son has Aspergers, and he's the easy kid, so I don't say these things lightly. I've been in tears in the middle of the night trying to prod the hysterical daughter from the bathroom - although it doesn't feel like it, this too will pass. :-)
Diane
Feb 09, 2011
Rating
starstarstarstarstar 		please answer
by: Anonymous

I would like to speak to anyone of you can help me. I have 2 nieces diagnosed with PDD-NOS (autistic spectrum disorders) Both girls between the various disorders, they also feel very uncomfortable to always wet after urinating, and we also avoid hygiene various parts intime.I urological examinations were all negative. we live in Italy, and doctors are not known these problems. If anyone has any advice or experience that can improve this great inconvenience, please kindly send a mail. thanks. marisa
Feb 07, 2011
Rating
starstarstarstarstar 		I have the same problem
by: Anonymous

my 4 year old daughter has had problems with tags, socks, shoes... you name it. I have concluded that she deals with some amount of sensory sensitivity which seems to be somewhat "common" in children, although most children with this tend to be autistic which my daughter is not.

We just started dealing with the wiping issue too. She complains that she cannot get dry enough after urinating and showering. I am at my wits end, but I honestly don't think there is anything wrong with her. I have been trying my hardest to get her to understand that this is something she needs to figure out how to handle.

P.S. I was a bit sensory sensitive as a child and it definitely has subsided the older I get. I am hoping and praying that this is only a phase and will get better in a couple months or years.
Feb 03, 2011
Rating
starstarstarstarstar 		Trial of Prozac
by: Anonymous

My M.D. friend, who has children herself with OT and psych issues, said to me as I was discussing with her whether these symptoms were a subset of OCD (there is some research pointing that way), "One way to determine if it is OCD or SPD is by trying Prozac and seeing if it helps. You can always go off if it doesn't."

To the British woman who is at her wits end, you know in 2 - 6 weeks after starting it if there is an effect. As such it would possibly be the most immediate way to remedy the situation, if she responds. Then you can get going on the longer term treatments. Just a thought.
Feb 03, 2011
Rating
starstarstarstarstar 		welcome
by: Original Poster

So sorry to hear your story but it does sound like many here. The good news is, for many of us, it seems there are "flare ups" of this obsessive behavior. It appears your daughter is in one now. I assume she was tested for urinary tract infection? My daughter used a towel for a while and the blow dryer. She became very dependent on the blow dryer so we had to limit that to only after showers. I have shared before about testing for PANDAS and Lymes Disease. Not sure if you have Lyme Disease (tick born illness) in the UK, but my daughter was tested 1 year ago and has been on antibiotics for it for a year and we have had no flare ups. (She still does an underwear wedge after going to the bathroom, but I am ok with that) Keeping my fingers crossed. PANDAS is related to strep throat. Did she recently or does she currently have strep? The OT was/is a help for us. We now go every other week and I am afraid to stop. If nothing else, the OT recognizes some sort of sensory disconnect and tries to help you and your daughter through it. Please keep posting here and keep us updated. wishing you and your partner and your daughter the best! Hang in there. You will get through this and your daughter will find ways to cope. As she gets older you will be able to reason with her more. My daughter is 10 and we can talk about it much better than when she was 7. Do not give up! I went to the pediatrician for 1.5 years and had them telling me my daughter was fine. Then I got aggressive and contacted a neurologist. I had to pay an out of pocket consult fee but he was the one who recommended the Lyme test. I am thankful for that everyday!
Feb 03, 2011
Rating
starstarstarstarstar 		My pee pee's wet!!! the rage of frustration
by: UK sufferer

Its in one way quite a savour to read about all you folks having identified the pee pee thing. Im in the UK and SPD is not widely recognised, even by GPs which is a nightmare when GPs (General doctors) are the gate keeper to getting referred to anywhere regardless of if its private or our wonderful (not) National Health Service which I have worked for for 13 yrs and received no help for my daughter.

My partner and I are beside ourselves in frustration, and so angry at the GP for and I quote saying "well, none of her behaivour stands out at me to be excessively abnormal". We typed up a list of weird behaviour, alot that has been mentioned here...tags in clothes, socks, tights, shoes, hair put up/being brushed, knickers (down to a favourite of 3) vests being stretched, trousers being pulled up exactly level with her belly button, coughing at night??! dreaming and screaming in her sleep, and HOLDING HER WEE IN AS WHEN SHE GOES SHE GOES INTO FITS OF 'RAGE' that her pee pee is wet!! as she refuses to wee before bed now, she sometimes gets up at night and wees and the screaming starts. Today it lasted an hour and a half until she fell asleep from exhaustion. During this we cannot help her with affection of reassurance...infact she gets up and walks away from us often very angry...shes started wiping with a towel...weird! but use to use lots of toilet roll. I suggested the hairdryer but she wont try it. We tried talc and on the rare occasion it will work. Life is aweful with her at the mo, and during the rage we feel obviouslyy tense, angry and lost..and heartbroken that we cant help. We have to listen to her for ages suffering...My partner is moving towards clinical depression over it...and so i feel like im trying to hold it all together. We are becoming resentful of mothers with 'normal' children and we are fascinated watching other children get clothes, shoes and socks on without having to think twice. We are angry with others that they have no idea how bad it is and how we are suspended in hell, and im sure our daughter is there with us. She use to be so happy and shes getting worse every day, and has fits of rage all the time with short windows of being ok.
I have given info about SPD to her school, as she often gets to class without socks and her jumper etc and the hair looking messing and 20 min late (even though we get her up 2 hours before)and just to add to the frustration she will just put them on for the teacher!

Makes us look stupid. We are paying through the roof to get her assessed sat (1 day to go) by a private OT...and we prey she will respond well to OT. Reading your posts when your kids have it aged 8 and 11 horrified us and didnt give us much hope..we are not coping at all!

Have any of you had significant improvements from attending OT? im exhausted right now in bed and i cant sleep for her coughing again!!! AHHHH
Jan 26, 2011
Rating
starstarstarstarstar 		So what do we do?
by: Anonymous

Yes, we have been going through this at our house combined with feeling like you have to pee but can't, yesterday we wanted to wash our hands alot. It comes and goes from day to week, some weeks nothing. But actually it's been a lot lately. Arrggh. I don't know what to do or how to approach it. She's definitely difficult at times but doesn't exhibit a ton of the symptoms of SPD but a handful. She also does this arm, face tensing thing when she concentrates on something. I'm so beside myself sometimes. HELP!
Dec 14, 2010
Rating
starstarstarstarstar 		Excessive wiping
by: Anonymous

Wow, my daughter sounds much like some of yours, however her issue is exactly opposite. She is constantly claiming her vagina is overly dry and sticking together. Of course, we have gone to the Dr. and ruled out many illnesses/infections/etc... we've also tried lubricants, etc.. nothing can calm her constant discomfort.

She is almost 11. Has had a long history of Sensory disorders and I do remember when she was younger we went through the "always feeling wet" stage. We've had lots of annoying "stages" that have come and gone. This one is especially frustrating because she will actually stick her hands down her pants in public to make herself more comfortable.

If anyone has experienced this and has a "solution" ... would love to hear about it. Thanks!
Nov 07, 2010
Rating
starstarstarstarstar 		***
by: original poster

Hi, I am not sure if you already go or not, but I have had my daughter in Occupational Therapy for 1.5 years. This does seem to take the edge off some of her symptoms. We are down to every two weeks. I think we all have thought about the possibility of the situation you are going through right now. I feel the same about trying to avoid medications and would like to try to avoid them when possible. Does she have a friend or relative who may have recently gotten their period too that she could talk to? Maybe if she sees she is not the only one, it may bring her comfort. Easier said than done.Maybe wearing a pad even when she does not have her period she would feel protected.

Good luck to you, and your daughter!
Nov 06, 2010
Rating
starstarstarstarstar 		Going through the same
by: Anonymous

My daughter has Tourettes and ocd. When I read your post, it reminded me so much of what I an still dealing with. My daughter does the ame with socks, wiping, and now worse, she is 11 and started her period 2 months ago. Now she says she constantly feels like she is bleeding all over herself. It is almost impossible to get her off the toilet. She does not like the way pads feel on her, and I have bought every kind there is. Please if anyone has any advice share it. She does have a neurologist but other than meds there is not much we can do. Thanks for the post..
Oct 30, 2010
Rating
starstarstarstarstar 		**
by: original poster

AJ, Hi, we went through the blow dryer phase too as a suggestion from the pediatrician. For us it worked great, but I had to limit it to after bath only, because there was no way we had time to do this after every time she went to the bathroom. It was a great way to deal with the situation. Good luck to you, your wife and your daughter! It can be frustrating, but I think we are all finding ways for our kids to deal with this in their own ways. In my daughters case, it is the "underwear wedge" as I call it. for some reason wedging her underwear prevents her from excessively wiping.
Oct 25, 2010
Rating
starstarstarstarstar 		Another possible solution
by: AJ

My daughter meets all the criteria listed by everyone on these posts. Age...4 and a half yrs, she waivers from socks that don?t fit right to wearing flip flops only, to certain panties that "fit just right", to now the excessive wiping and feeling of being wet and "dripping". I along with my wife have taken to acknowledging her feelings along with allowing her the power of accepting what she feels works best for her. For now the excessive wiping and wetness after urination is en vogue, for lack of a better term, in her mind. For her, we use the blow-dryer. After she goes to the bathroom or gets out of the tub we turn on cartoons (bit of a visual mind distraction for her) in our bedroom, turn the blow-dryer on cool and low and allow her to sit commando on the bed until she feels dry. She'll normally sit there for about five minutes before she either turns the blow-dryer off herself (so she can here Phineus and Ferb lol) or put on her panties and goes about her merry little way. I think for her, because she is so strong willed, much of this is about the power of making her own choice and deciding she is dry when she says she's dry. This might not be an optimal method if you're running late in the morning trying to get out of the house but hey...there's always the option of getting out of bed 15 minutes earlier. Thanks to all who have posted and continue to post here...my wife was also literally in tears. I know for her as well as I, it's important to know there "are others out there among us". :)
Oct 03, 2010
Rating
starstarstarstarstar 		Been there..follow-up
by: Anonymous

I posted in May, so here's my follow-up. My now 9 year old still goes commando and wears her "toilet paper underwear", but at least it's been 5 months since the excessive wiping issue. School started last month, and we're back to her wearing the same 2 outfits every day to school. She wears fuzzy socks with sandals (now that's a fashion statement) and we still can't find sneakers whe will wear to gym class. She refuses to use the bathroom at school, and practically runs home from the bus like she's going to explode!

But on the positive side, she is doing great in school, has 2 BFF's, actually wears her leotard to tumbling class without a tantrum, and has found ways to work around her quirks. I'm positive she's SPD, but she is so strong-willed that she won't listen to my suggestions, she has to come up with a solution on her own. Her brother has Aspergers, so I'm sure that's also playing a part.

So we are having our ups and downs, and luckily they seem to balance out. I keep UTI testing kits at home to make sure nothing bigger is going on, but otherwise I'm just trying to...hang on (couldn't think of the right word!). But reading these posts every couple of months really help, because at least I'm not alone in this struggle. I love hearing everyone's suggestions.
Sep 27, 2010
Rating
starstarstarstarstar 		happy we're not alone
by: Andrea

In the last two months we have realized that our 4th child, 3.5 yr old Amy, may very well have SPD. Now that I've read this page I'm more convinced. We have had trouble with clothing, shoes, hair, and many other areas for the last yr or two. Just recently she started with feeling wet after going to the bathroom. She holds it as long as possible then it's quite an ordeal when she goes now. Tonight we waited for over 15 minutes for her to finish sitting on the toilet till we ate dinner. She thinks sitting there will dry it enough to feel fine. Then it's still not enough. Sometimes powder will do the trick for her. She seems to do better with her issues if there's a motivation involved (like candy or an activity). We can get quite exasperated at times. Glad to hear there are other people dealing with the same issues. I have the book "Sensational Kids" which I really need to get reading more. Hoping it has some helps in it. Thankful to know there's a "name" for it but waiting to hear about some wonderful ways to deal.
Aug 29, 2010
Rating
starstarstarstarstar 		lyme disease link
by: original poster

Mom of one, Hi I am the one who started this thread and starting into our third year of this "wiping" I know exactly what you mean about the amount of toilet paper. We have had clogged toilets as a result of this obsession.

I just want to let you know, through the advice of a child neurologist I had my daughter tested for strep and Lyme disease. I live in the mid atlantic region (high incidence of Lyme disease here).

The pediatrician was reluctant,but did it anyway. Looks like in my daughters case she has Lyme. Now it is thought that she has had Lyme for a while and it may be the cause of the OCD wiping. My daughter had NONE of the typical symptoms of Lyme. No joint ache, or sickness. we are now seeing a Lyme literate doctor who is treating her. Not even sure if this is the root cause of the wiping or not, but I am desperate and this at least seems to be some sort of explanation. The Strep came back negative for my daughter so PANDAS was ruled out. On one more note, my pediatrician also told me initially the Lyme test was negative. I got a copy of the blood work for the neurologist to look at and he, an infectious disease doctor, another pediatrician and the Lyme doctor have all said she has it. Please get the copies of any blood work results and have a second opinion just to be sure. I think some of the pediatricians do not get the severity of this issue. It is difficult to watch your child suffer! Starting to separate yourself from going into the bathroom with her is a great idea. I used to go every time my daughter went then I would try to talk her into doing things differently. It became a battle and I think it made things worse. I also notice flair ups of this. She is never "normal" when wiping, but there are times where this flairs up for weeks and becomes to much!
Aug 29, 2010
Rating
starstarstarstarstar 		Dear MomOfOne
by: Princess & Pea

I'm glad the your-body-is-trying-to-protect-you speech is working for you!

Here's an idea on how to help determine how much is too much toilet paper: Cotonelle makes a toilet paper for children that has a dog and paw prints printed on it. The design takes up 3 or 4 squares of toilet paper. I think it is made for the very purpose of showing kids how much to use.

p.s. Thanks for calling me "absolutely brilliant." Will you be MY mom? ;0)
Aug 29, 2010
Rating
starstarstarstarstar 		P.S.
by: MomOfOne

To the mom who wrote "I came across this page thru tears of frustration, feeling like a failure as a mom." - you and I are totally on the same page. I wanted to tell you are NOT ALONE and thanks so much for posting so I know that I am not alone either. I completely understand not wanting to 'force' your daughter to speak to a doc - my daughter tends to be kind of shy - and I also don't want her on medication unless there is absolutely no other option. Also, I totally agree that "I don't want to make her feel like she is doing something wrong or in trouble." And "I can't get through to her". Last night in our row, I was just basically like, You use too much toilet paper, *period*! (How can they not see that??) And I woke up this morning feeling like a 'bad mom'. :-( My daughter, too, is a "good girl". So you essentially wrote my story, and I thank you. I am going to try the words that the other parent wrote, and also I am going back to the doc for blood work.
Aug 29, 2010
Rating
starstarstarstarstar 		thank you all so much.
by: MomOfOne

I had found this page before, but after last night's row I needed to come hunt for it again. My 11 year old daughter has had some symptoms of sensory disorder (the socks, soft clothes, etc.) and we are now having problems with the wiping. For a while she wore pantyliners in her panties; this was fine w/me, I figured eventually she's going to have to learn how to handle feminine products anyway. She stopped dong that, but now she wipes and wipes and I bite my tongue again and again. I honestly don't get as upset about the repeated wiping - I can sort of understand that, in some way - as I do the fact that she uses a GIANT WAD of paper each time. Last night my eyes got big at the amount she was using, and she snapped at me and I snapped back, and off we went.

I think that person who came up with "I explained to her that her body was just trying to protect her by being very sensitive, including sensitive to the sensation of moisture after peeing, and that that was a good thing. But the body was doing too good a job of it and she needed to step in and take over." etc is **absolutely brilliant**. My daughter is pretty responsive to logic and likes for things to make sense. I am going to try this with her.

I also share completely the reluctance of another poster, to take their child to the doc/psychiatrist. You just never know whether the doctor you see is going to be a good match for your child and/or you. Since my daughter's symptoms are relatively mild, IMO, I sometimes wonder whether focusing attention on the problem via a doc would be helpful, or would make it worse.

Also, thanks to the posters who mentioned strep. My daughter did have an irritation around her anus and the doc thought it might be strep, and swabbed it but the test came back negative. But maybe I will insist that blood work be done. Yes, I think I will go back to her regular doc, tell her about the wiping, and ask for a blood test.

The main thing that this site helps me is to have sympathy and empathy for my daughter. Keeping my mouth shut all the time is really hard (I mean, REALLY hard) and it's inevitable that every now and then I will "blow". I think I'm going to make a point of being in the bathroom with her less. In our house we have an 'open door' bathroom for the most part, it's just the three of us, so often two of us are in there together. She excels in so many ways and handles school, etc. just fine so I hate to make too big a deal out of this one thing. Does that make sense? But every now and then it just gets to me.

Thanks again, you guys have truly saved my life.

Aug 16, 2010
Rating
starstarstarstarstar 		my 8 yr old too!
by: sarahsmith

My 8 yr old started with clothes sensitivity at 4, and it got better at age 7. Maybe the fish oil has helped.

She recently started with this same wetness issue.
Started her on a vitamin called Empower plus recently. She has rages and it may be bipolar, but it's hard to say. Maybe sensory puts her in this really agitated mood.
May 29, 2010
Rating
starstarstarstarstar 		Autism?
by: Anonymous

Hello , my daughter also has this problem which has persisted for some years, but also other sensory impairments. Please if you have any advice for me. For example about the diagnosis... does the psychiatrist consider this an autistic symptom? This is my question what do you think? thanks greetings.
May 12, 2010
Rating
starstarstarstarstar 		Robbie---Follow up
by: Anonymous

Dear Been There et al.

Though my daughter's situation thankfully was short lived (about 4 months) I too found that the situation greatly improved when we begin to act like it all was no big deal (very hard at first) and started looking into whatever worked daily. At first my daughter went commando, then we graduated to her to the "mini diaper" [a maxi pad cut in half put in her underwear] phase, to powder patted on her vagina, butt in the mornings before school. We found that letting her decide what she was comfortable with on a daily basis without judgment helped her to be open to new suggestions. At this point, she rarely even wants the powder and rarely has problems with socks anymore--though she wont ever wear jeans or pants that aren't soft but after everything who cares.

I am thinking that my daughter's phase really sprung from the trauma of my husband and i going away for four days when we had only left her overnight once before. It seems that maybe all of this is really about control and perhaps it started when she felt that she had no control over a situation and it freaked her out. Who knows but it all seems to be behind us now (fingers crossed).

I'm wishing you all the best,
Robbie
May 11, 2010
Rating
starstarstarstarstar 		Been there...
by: Anonymous

I found this sight after frantically searching the internet for a reason why my 8 year old would spend so long wiping. Ruled out, UTI and yeast infection, and I was sure she was OCD. Then I found the SPD sight, and it described my girl exactly! She literally would only wear 2 pants and 2 shirts since school started last fall. Socks and shoes have been a nightmare forever.

I can't even discuss the underwear situation.
Surprisingly, my daughter found a solution she can live with. Not sure I can, but we're giving it a try. She goes "commando" - wears no underwear at all anymore. She usually wears, what she calls, her toilet paper underwear. It makes me cringe, but suddenly she is wearing different clothes every day of the week. And *gasp* she wore blue jean shorts to school last week. She hasn't worn denim of any kind since she was 2.
The bathroom issue is basically gone. Her "toilet paper underwear" must give her the dry feeling she has been craving for so long.
May 06, 2010
Rating
starstarstarstarstar 		Dear Scared,
by: Princess & Pea

Just wanted to let you know that it won't always be this hard. In my experience the wipies/fussies ebb and flow. Hang in there.
May 05, 2010
Rating
starstarstarstarstar 		Scary
by: Anonymous

My daughter is having same problem with excessive wiping and always feeling wet. It is so bad that she wait to go to the bathroom, she will hold it all day. She is in kindergarten and does fine but has not gone to the bathroom all day for a few days now. I have been so frustrated. On top of that she is constantly having tantrums. I don't know what to do.
Apr 06, 2010
Rating
starstarstarstarstar 		So glad to have found this site...
by: Anonymous

I have a 6 1/2 yr old daughter who is going through the "I'm still wet" stage, even after going through a half roll of tp! When looking this up on the internet, so many sources claim that it's due to sexual abuse, etc., which is definitely not the case.

After reading some of the other comments, some of her other behaviors were brought to mind. She has a fit about socks - wears the heels above her ankles, refuses to wear jeans, can't stand when her shirt gets wet, and so on. Someone mentioned trauma playing a part, and I realized the wet thing had started again after my dd found out she was going to have surgery. I figure she's stressed about that and it's making this whole thing worse.

A few years ago, she was wiping excessively, and complaining that she was wet. When I took her to the doctor, we found out that her inner labia had fused together, so the pee was getting stuck up there. A little estrogen cream opened it back up. I did notice that it's starting to close a tiny bit, but she says the cream makes her feel wetter.

It is frustrating to deal with the meltdowns and going through rolls of tp in a day. What drives me nuts the most is the constant touching of herself.

Anyway, I'm glad to know there are other people going through the same thing. Would love to hear about things that have worked for you.
Mar 01, 2010
Rating
starstarstarstarstar 		Been going through "retun wiping" for years
by: Kim

I honestly don't know what to do. My daughter is 8 now but has had this excessive wiping problem for about 2 years now. We did the urine tests and with normal results, hoped it was just a phase. She returns to the bathroom 5-6 times to re-wipe saying she feels drips. If I don't let her return to wipe again, she jukes and jives and pulls trying to make it right.

She has never been difficult with any other issues. No other OCD behavior exists. In fact, she is pretty easy going except for this problem. If we go out somewhere, she immediately asks to use the bathroom and even then she wants to return to wipe some more. Sometimes before bed, she will go through tons of toilet paper and actually sneaks out of bed to wipe.

Since she doesn't have any other OCD behavior, I don't know where to start with treatment.
Feb 23, 2010
Rating
starstarstarstarstar 		Sexual Trauma
by: Princess & Pea

I remember a few weeks ago there was another concern about possible relationship b/t sexual trauma and excessive wiping/feeling of wetness. I wanted to write back at that time b/c the author seemed to need some support. And I thought she might be feeling guilty unnecessarily. But who's to say her concern wasn't valid??

This latest post reminded me, I just wanted to let her (and anyone else who was wondering) know that we appear to have a case in which "phantom wetness" arose without any apparent sexual trauma. In our case it was not associated with any negative feelings about sexual development or exploration. Our daughter started wiping excessively after a garden-variety upsetting event. I also note that changes in routine seem to bring it out.

I'm a stay-at-home mom with only one child. My daughter had not been out of my sight for the first 4 years of her life. She started the wiping thing at 4 years three months. It was after an upsetting event. She had just started a gymnastics class--the first class or "school" she had ever attended. On the first day the teacher completely forgot her in a corner and moved on with the rest of the class. I watched the whole thing. A day after-wards, my daughter told me she wet herself. When I changed her clothes, there was not a drop in her panties. It was a few days after that that she started wiping excessively.

It seems to me that any traumatic event could trigger this sort of reaction. Even an innocuous change in routine. We've been dealing with this for about a year. It has ebbed and flowed. Changes in routine and mood bring out the "wipies," if you will.

Looking back on it,I think she showed a predisposition toward this sort of thing. She was always fussy about toileting (as well as getting dressed and eating.)For example, she had to have her undies pulled up first and then her pants. If they were pulled up together, she'd throw a fit.

I think the "wipies" are not so uncommon, at least in a less severe form. I've talked to two other moms in my community within the last month who have been dealing with the same thing. I was comforted to hear their stories. One friend has noted the problem but is not tearing her hair out. Lucky her. The other has more concerns, noting some defining OCD behaviors.
Feb 22, 2010
Rating
starstarstarstarstar 		2nd post
by: Robbie

Well, the plot thickens in our case. I was reluctant to assume my daughter actually has SPD as she doesn't have any other symptoms save the socks issue. Since I recently bought seamless socks she no longer has any probs with socks just the complaining (crying and anxiety that her vagina is "wet."). After discussing the issues with her at length (though admittedly hard with a 4 1/2 year) she told us that he wet vagina only started after her childhood friend a boy she's been close to since infancy recent stuck his finger in her vag and "played with it" that it got wet and now its it a source of great embarrassment to her. She even told me that she had a bad dream where her vag was leaking and that her friends at school were making fun of her. All of this she told me tearfully and is truly greatly bothered by the incident. Her candor and ability to really feel this shame is of obvious concern to us. We played the whole thing down with her, that it is normal for a vag to get a little wet when played with and that is okay. We told her that we weren't mad with her at all and that is okay to be curious but that she should never let anyone touch her there if she doesn't want them too.

So what to do now? I tried everything from letting her go without underwear when wearing pants or see can wear pull ups to school if she is more comfortable, since nothing to seems to abate her fear that her vag is going to drip and that everyone will see it. She seemed ok over the weekend but today I found out that during the day she simply took off her underwear and went commando with her skirt!!! She again stated that she took her undies off b/c they were "wet." Ugh.

I guess i'm going to need to consult a child psychologist? Or if anyone out there has any experience with her growing out of this issue. In the meantime, I created what I call a mini diaper in which i cut a thin maxi pad in half and put that in her underwear. She seems ok with this for now.

I just don't know what to do. This excessive talk of her wet vag. with her obsession with playing with herself to see if she is wet or not is just too much. I'm really worried about the whole thing since she now takes over an hour to get dressed in the morning cuz she is anxious that her vag. is going to somehow drip out water.

Your feedback is appreciated.
Feb 19, 2010
Rating
starstarstarstarstar 		had our urologist appt
by: original poster

We had our urology appt at Johns Hopkins and the Dr. was very responsive. She said that this could be a constipation issue or that my daughter is not relaxing her muscles enough to fully empty her bladder. We had a ultrasound of her kidneys and bladder done two years ago and it showed she was not completely draining her bladder. Over the past two years I was told by another urologist that the amount she kept in her bladder was acceptable. This new urologist did not think so and either did the radiologist who initially took the sonogram 2 years ago. Therefore, we are now getting an updated ultrasound to see if she is still holding urine after voiding and also an xray of her kidneys and intestines to see if constipation is an issue. I am continuing with OT as this seems to help my daughter handle this sensory issue she is having.

In the meantime, my daughter has been diagnosed with Lyme Disease which also apparently can cause OCD like behaviors. (When I was having her tested for PANDAS they also tested for Lyme since it can mimic PANDAS symptoms.) My daughter had no other Lyme symptoms it was just a fluke that we discovered this. She is on 30 days of antibiotics and although I do not know if any of this is related, I am hopeful that we are on the right track to some resolution with the help of this Urologist and treating the Lyme. I will keep you all posted and I am hoping everyone is getting some resolution for their kids too!
Good Luck!
Feb 18, 2010
Rating
starstarstarstarstar 		me too
by: Anonymous

Interesting that we all seem to have 5 year olds. My daughter is 5.5 yrs old. She also had major underwear issues. I think I spent $1,000.00 on underwear trying to find comfortable ones. Once we found Hanes Wedgie Free that issue stopped. She is also picky about soft pants. She just started the pee thing. She wants to wipe with a towel. Paper just doesn't do it for her. She seems to have a UTI right now. She said it hurt to pee yesterday and we went to Dr. who said her pee appeared to indicate a UTI but are awaiting lab results. When we got home from Dr. she wet her pants. We started Bactrim yesterday and are awaiting conclusive test results. Today she also had an accident. I am hoping it is a UTI and not some bigger issue. I am wondering if she has had a low level infection that caused some leakage and led to the towel thing. I just don't know. I haven't done therapy yet, I am just hoping she will outgrow it. Really, the underwear thing probably took 5 years off of my life. WOW! Just wanted to let you all know I have one too!
Feb 14, 2010
Rating
starstarstarstarstar 		Phantom pee-pee and excessive wiping
by: robbie

Wow. We are now dealing with the same excessive wiping, can't get dry issue in our 4 1/2 year old. It all started about 10 days ago when my husband and I finally went on our honeymoon and left her with her favorite babysitter for 4 days. Also her issues finding tights and socks that don't feel "weird" has just gotten a little crazy in the past month, as well. I was happy thinking that it was just a phase but now realize that it is probably something deeper. My daughter's father has ADD and her step brother has ADD with sensory issues too. So I'm thinking that the apple hasn't fallen too far from the tree here...

I am happy to know that we are not alone but I am also hoping to hear of some solutions too. It seems that the posts I have read have not really included what the OT or psychologists have said and what treatment these children are on. If someone could share the treatments and any progress being made, that would be beautiful. Since the wiping thing has just started (I found comfort seam socks that seem to address her perfect sock fit freakouts) I am reluctant to take her to an OT at this point with the thought that she might have to go later down the line.

Thanks to all of you for sharing your stories. It is really disheartening to think our kids are so seriously so anxious about phantom pee pee and clothing seams. I know we all just want our kids to feel safe and happy.
Feb 02, 2010
Rating
starstarstarstarstar 		Visit to Urologist
by: Tawnya

We made our visit to the urologist and they confirmed by ultrasound that her bladder was emptying fully after urination. When we first told them about it, they were very familiar with the symptoms. The doctor explained to her that the inside of your mouth is wet just like girls down there, but you don't try to dry the inside of your mouth out, so you shouldn't try to dry yourself out down there. When I showed them the many posts from this website, they confirmed that with my daughter it was nothing physical, only sensory processing issues. She has really good days now, which is good. She has gotten to the point where she tells herself she can do it, she can get off the potty and quit wiping after a couple minutes. This helps if she psychs herself up like this.

Since then, however, she has had another distraction to worry about. Last Wednesday, she was in a go-kart accident and has one fracture in her orbit and two in her sinus cavity. She also banged her leg up, so she has been more worried about that lately than her bathroom issues. We are just hanging in there and hoping she grows out of it. I have noticed an improvement with her chiropractor visits.
Feb 01, 2010
Rating
starstarstarstarstar 		wiping
by: fiveatpeace

Though my daughter is now grown, for some reason I have still been bothered by how much she wiped when she was young. Because my daughter was too young to communicate specifically why she was unhappy at a babysitter's house at 18 months, then she later became obsessive with wiping and then cleanliness in general (picking at pores on her face) I wondered if she had been sexually abused. I had thought that she cried when I left her because of separation anxiety; 6 months later I decided to pull her out and take her back to the old sitter. She never cried again. But then later there were all these wiping issues. I wondered if somehow it might be connected in some way. As I listened to a woman talk about her own daughter's sexual abuse and how she wanted to scrub her daughter clean hoping it somehow would help take away the filthiness of it all, it just made me wonder again. Has anyone heard if this symptom could be a result of early childhood sexual abuse?
Jan 30, 2010
Rating
starstarstarstarstar 		Sock Fairy
by: Princess & Pea

Hi,

Your post about socks reminded me. I wanted to tell you all about SmartKnit KIDS Seamless Sensitivity Socks. They help. Also, I've been putting on her socks at night while she's asleep. After her bath at night we usually dress her in the next day's clothes. It avoids changing clothes in the am. For us the mornings were always the worst.
Jan 30, 2010
Rating
starstarstarstarstar 		My Daughter Shares the same Symptoms
by: Robert

My daughter also has issues with excessive wiping and feeling wet. Along with this she is very finicky about socks complaining about lumps that we can't feel. Even from an early age she has similar problems. When she was three we went through a few months where we could not get blanket adjusted right when putting her to bed. We'd would try over and over before she finally felt it was OK. We naturally worried about OCD but she did not show other symptoms. Thankfully she stopped having blanket issues, but shortly after began having clothing issues. Socks, pants, and underwear were problematic. She would only wear overalls for awhile then suddenly she wouldn't wear the overalls and wanted to only wear soft pants. So far distraction has been our only successful strategy. Bouncing her on the bed or having her balance a tall toy like a bat has helped but it is difficult to get her calm enough to try. On the bright side we have seen progress on socks and other clothing. We found the Hanna Anderson socks and pants are softer and seem to fit her better. Thankfully she seems fine otherwise. She makes friends easily and is doing well in school. I'm hopeful that the excessive wiping will fade in the next few weeks. As others have said it really helps to know there are other people out there looking for answers as well.
Jan 22, 2010
Rating
starstarstarstarstar 		update on us
by: original poster

Tawnya, Please keep us updated. I am interested in what the ped urologist has to say. I am taking my daughter Feb 15th to a pediatric urologist. I am glad to hear the chiropractor is helping if only a small amount. My daughter is back in OT for a few weeks. She (the OT) suggested buying a small trampoline, (the exercise type) that can go in our basement and have her jump on that before getting dressed. I guess it gets the sensory system moving. I has helped slightly getting her dressed and reduced some wiping, but not all by any means. Interestingly enough my daughter had an orthodontic expander put in her mouth right when she regressed back to her old ways. The OT said that that the pallet expander can put extreme pressure on the sensory system (even if the child is unaware of this) and can cause a regression. So we are thinking this may be a reason for her set back. I am really interested in the urologist diagnosis and if any tests are recommended. I am dreading the appt with the ped urologist because I think they are going to recommend the VCUG test and that will surely set my daughter over the edge. Keep us posted!
Jan 21, 2010
Rating
starstarstarstarstar 		Another Urology Appointment Tomorrow
by: Tawnya Fowler

I began taking my daughter to the chiropractor and believe it or not, she went three days without wiping excessively and constantly feeling wet. She also began waking up dry instead of wetting through the night. I am convinced that chiropractic has helped her. After three days, though, she was crying because she began wiping excessively again. I am taking her to a pediatric urologist tomorrow and will keep everyone posted. I will also continue to take her to the chiropractor. This really seemed to help initially and I am convinced that it will continue to help. We maybe just had a little setback.
Jan 15, 2010
Rating
starstarstarstarstar 		Comforting
by: Sara

It is comforting to know that I am not alone with this issue anymore. Thank God for the internet! I'll be checking this site frequently for any new ideas or breakthroughs, as well as posting any new ideas or info that I have.
Jan 15, 2010
Rating
starstarstarstarstar 		Original poster again
by: Anonymous

Hi all, I now have my daughter temporarily back in OT. I as well do the brushing technique. It seems to relax her but never takes away this wiping issue. I am also taking her to the Johns Hopkins Pediatric Urology center in February to go further down that road. I am not convinced there is not something going on with her urinary system. I figure they will be the ones to figure that out. I have been avoiding that because of the invasive testing they do to discover urinary issues, but I am hoping to get some answers. PANDAS has not proven to be our problem through the blood testing, however, my daughter does have some markers in her blood for early Lyme Disease. Apparently that can cause some OCD behaviors. She is having more blood drawn Monday to check to see if there are any further signs of Lyme. I will keep you posted. Maybe between all of us and the things we are trying we can get to the bottom of this!
Jan 14, 2010
Rating
starstarstarstarstar 		Supplements
by: Princess & Pea

My diagnosing OT suggested fish oil supplements for omega-3s. She said that some skin sensitivity responds to it and, given our little one's aversion to most sources of omega-3s in her diet, it couldn't hurt. I've also learned from other sources that these compounds are supposed to be good for mood and brain development. The OT recommended a particular brand that you can buy at Trader Joes or Whole Foods. I've now forgotten the name, but it comes in gel form in a tube (like a yogurt tube). She said they were particularly high quality. My daughter didn't like the taste, so we're using a gummy instead, but I thought it was a sensible and recommendation.

Good luck with the counseling. We're right behind you! We switched insurance companies thinking we might need regular mental health visits. I'm still collected recommendations for counselors. I'll tell you how things go, too.

For now, I'm finding that in addition to brushing and deep pressure, distraction works. I think this is the nature of OCD. I'm purposely trying to give her positive things to distract herself with in an effort to supplant any obsessions that might be developing. We think and talk about Santa, X-mas, summertime, and her sleep toy while we take slow deep breaths until her body accommodate the sensations.

We are also dealing with some amount of --what I think is--excessively demanding and manipulative behavior that goes beyond any solace we can offer her. For that we are using a very consistent reward system of minutes of playtime. If the whining is excessive, minutes are taken away. She has an opportunity to earn them back with good behavior or by taking on a challenge, if she chooses, such as wiping only one time or crumpling her sock up in her shoe and wearing it around for 15 minutes. She invariably adjusts to it and forgets all about it. She's pretty proud of herself for completing these challenges. My hope is that she'll build up confidence that she can handle the initial discomfort.

I had one idea that I thought was great, but it's totally NOT working. I explained to her that her body was just trying to protect her by being very sensitive, including sensitive to the sensation of moisture after peeing, and that that was a good thing. But the body was doing too good a job of it and she needed to step in and take over. I suggested she say something to the effect of "Thank you body, I know you're trying to protect me, but I know that I'm dry because I can see the paper is dry. You can't see what I can. I'm the one in charge and I promise I'll keep you safe and dry."

Anyway, I thought this was a brilliant idea and it's not working. I still try it every once in a while just to see if it looks like it might take hold.

I'd love to hear what others have tried. What has worked and what hasn't.
Jan 14, 2010
Rating
starstarstarstarstar 		Follow up
by: Sara

I posted yesterday with the title "My daughter too!!!" I will post any info I get when we see the counselor on Saturday about this wiping issue. A few weeks ago I was at my wits end argueing with my daughter about clothes and it was affecting the whole family. It was affecting every aspect of our relationship and her behavior. Even when she was not complaining about her clothes she was grumpy and disobedient. One change I made was to start consistently giving her vitamins and natural supplements. I figured that her little brain needs all the help it could get to cope with her stresses. It may be a coincidence, but I do see an improvement in her behavior. Might be worth a try for some of you, if you're not doing it already.
Jan 13, 2010
Rating
starstarstarstarstar 		Yay! Two more out there!
by: Princess & Pea

So nice to hear about two more kids like my little one. She just turned 5 a few days ago. For her it started with difficulty with certain food textures as an infant,then discomfort with "crumples" and seams in socks, elastic in her underpants, sleeves getting wet, wiping and still thinking she's wet, and sensitivity to her hair getting in her face.

Morning routine--toileting, eating, dressing, and fixing her hair, especially with winter static and having to bundle up in layers--couldn't be more challenging.

I've found that Willbargher brushing DOES desensitize her and deep pressure is calming. But it's not a cure-all. I suspect OCD, too.

I'd love to know about anyone's experience with psych treatment, specifically what approach they use with such young children. Is it exposure and response prevention? How do they approach such a sensitive issue as peeing and wiping?






Jan 13, 2010
Rating
starstarstarstarstar 		Excessive wiping and she thinks she still wet.
by: Anonymous

I thought I was the only one !!! My daughter does the same thing. She is Five yrs old and she wipes so much its red and she pulls down there. I brought her to the specialist and couldn't find anything. I think its OCD.
Jan 13, 2010
Rating
starstarstarstarstar 		My daughter too!!!
by: Anonymous

Wow. This is the first day that I have done any research to why my almost 5 year old daughter wipes excessively after peeing. She is going to her first visit with a counselor in 3 days because we've been having MAJOR problems getting her dressed in the morning. Nothing is comfortable except summer dresses. It didn't even cross my mind that the wiping issue could be related to her clothing issue. I've been thinking she probably needs to see a urologist, but now I will be sure to mention this to the counselor. I'm shocked that there are other kids out there with her exact same issues. I am disappointed to see that there are not any simple solutions to this.

My daughters own way of coping with this is to pull her underwear up so far that she is "flossing" it between her privates. It looks disgusting and I hate it, but it does seem to do the trick for her.
Dec 29, 2009
Rating
starstarstarstarstar 		to ISO: SI OT in MD
by: Anonymous

There is a great OT office in Frederick Md. Not sure where you are in Maryland. The name of the place is Way to Grow. If you do a web search you will find their website. Good Luck!
Dec 29, 2009
Rating
starstarstarstarstar 		back to the old drawing board (long)
by: Anonymous

Original poster here again. Just as quickly as we finished OT and thought we were fine, my daughter is almost as bad as the day I first posted over a year ago. I do not think it was stopping the OT as it has only been two weeks. We had missed a week in the past and there was not a response like this. She is still better with the other sensory things, but the bathroom is an issue again. I am taking the advice of one of the other posters and getting PANDAS checked as an option . Apparently toileting issues are very common in PANDAS kids and in my daughters case she has flare ups (as we are in right now) also common in PANDAS kids. I am heading to the pediatrician today and not only having a urinalysis, but also asking her to do blood work to see if my daughter has any strep in her system (the main factor in PANDAS). I do not know whether to hope for this or not as I would love to finally have an answer, but I also do not know if I necessarily want her to have PANDAS.

It does seem that when my daughter is on antibiotics her symptoms lesson dramatically, probably because if there is strep in her system, it is taking care of it. She never tests positive for strep throat so I am asking for blood work. I guess they can have strep in their system and no symptoms at all. Funny thing is one of the many urologists I had taken her to last year suggested PANDAS, but since she had no recent strep he said it probably was not it. Now I realize it does not have to be strep throat. Also the key factor is obsessive behavior that starts overnight or out of the blue.

My daughters did as I imagine many of yours did too. I found a child neurologist in New Jersey who specializes in PANDAS and I spoke to him on the phone. He suggested investigating this as her symptoms could definitely be PANDAS related. I just wanted to throw this out there to all of you as we all seem to have similar issues. Many Peds do not know a lot about Pandas, but if my pediatrician does not agree with testing my daughter, I am searching until I find one that does. I promised my daughter that I would make this better and 2 years is long enough for this to go on. I used to feel better leaving the ped office after they blamed it on her rough wiping or not wiping right etc. I felt like that was a valid reason and I was happy to hear there was nothing wrong with her. Clearly this is not her fault. I can no longer have her thinking it is something she is doing wrong. well not anymore

I know there is something very wrong and I will post here as I go through this and hopefully get some answers that may lead some of you to some answers too! Keep your fingers crossed for me and for the next few weeks as just getting her dressed is a total challenge. Good luck to you all! I will keep you posted!
Dec 29, 2009
Rating
starstarstarstarstar 		Please tell me the name of the Md OT
by: ISO: SI OT in MD

To the original poster who found relief for her daughter through SI treatment in Maryland . . . Can you please let me know who you saw? I'm in the same position with my daughter. I live in Maryland.
Dec 22, 2009
Rating
starstarstarstarstar 		Having Same Problem
by: Tawnya

Hi There,

While I was researching bathroom issues with my 7 year old daughter, I discovered the SPD website where I found other mothers who were experiencing the same issues as I am with my daughter. My daughter will spend 30 minutes in the bathroom after urinating stating she is not getting dry - she says she is leaking. When I check her with toilet paper, she is dry as a bone. I am soooo very frustrated.

I was glad I researched it online and found this website. I have taken her to a urologist and they find nothing wrong with her and I am trying to plan my next course of action. I am considering taking her to a chiropractor as well. They deal a lot with neurological issues.

Please let me know if you have found any solutions or if it will eventually subside.

Tawnya Fowler
fowlerdental@aol.com
Dec 22, 2009
Rating
starstarstarstarstar 		Excessive Wiping after Urination
by: Tawnya

I first took my daughter to the pediatrician due to her feeling like she was constantly having to urinate (like she could never get done). They did a urinalysis and an antibiotic. The urinalysis came back nonconclusive due to contaminants. The antibiotic gave her a yeast infection. The yeast infection is now cleared up; however, she stays on the potty for 20 - 30 minutes constantly wiping after urinating. She even gets a towel out of the closet and puts it between her legs because she says she is still leaking. When I check her with toilet paper, she is dry as a bone. Has anyone else experienced this and will she eventually grow out of this? Very frustrating!!
Nov 22, 2009
Rating
starstarstarstarstar 		My daughter has stopped
by: Brenna

My daughter has gradually "outgrown" this. She has not been wiping excessively since she started Kindergarten this fall. I canceled the appointment with the behavioral psychologist. I am hoping she is over it.
Nov 20, 2009
Rating
starstarstarstarstar 		original poster here a year later
by: Anonymous

Hi, I am the original poster of this thread. Last Thanksgiving was my breaking point with my 7 year old daughter as she was out of her mind uncomfortable when we were away for Thanksgiving, In April I had her evaluated for Sensory Processing Disorder by an OT. Make sure to get with an Occupational Therapist that specializes in Sensory disorders. They did a test on her (a long test) and determined she had a mild case of SPD and could benefit from therapy. We have been going every week.

I live in VA and drive to MD each week for this as there were none around me. We are nearing the end of her treatment and I must say, I have a different child. Now I will preface this with she is not free of all of her symptoms. But... she gets dressed BY HERSELF in the morning and still has some toileting issues, but not the severity she had and I am not involved in it at all. (I used to have to be in the bathroom with her and it broke my heart to see her wiping so much) She still wipes hard, but not as much.

She can tie her shoes without me helping her get them so tight that circulation was cut off. We still have tag and sock issues, but they are so minor than what we were dealing with. I just get seamless socks and cut tags. The pediatrician tried to make me think this was OCD and that she needed a psychologist. I went with my gut and I feel good about it. My ped did not even have an OT to refer me to because I do not think she believed in SPD. You will run into that. I am fearful as we stop treatment in December, but I feel that we are in a better place this year.

Good luck to everyone, I am curious to see your outcomes. It is nice to know we are not alone. I will check this post more often, I did not know there were other posts.
Nov 19, 2009
Rating
starstarstarstarstar 		happy to see im not the only worried mom out here!
by: Jamie

Omg... I seriously started crying reading these comments! My daughter will be 5 Dec.7. She just started excessive wiping and dribbling in her panties problem a month ago! It is terrible. She wipes SO hard over and over. She's also been wetting her panties often. She tested negative for a uti.she has also been so grouchy and mean lately! It also takes 15 mins of fighting on a outfit for her to wear to school, every morning. She's also started being scared of dark. Its been very strange seeing my 4 yr old little girl change in the last month.ps I would NEVER think a 4 year old can have OCD?! Please email me if u have any answers! Branin2@comcast.net (Jamie)
Jul 08, 2009
Rating
starstarstarstarstar 		PANDAS
by: Anonymous

My 5 yr old started the excessive wiping after urinating a few months ago (along with clothing and eating issues). She was diagnosed with pandas. Pediatric autoimmune neuropsychiatric disorder associated with strep. If your child had a sudden onset of OCD like behavoirs- please consider pandas. Have your ped do a strep test. Although there are no easy answers for pandas, it is helpful to have a diagnosis. check out www.Latitudes.org for a great forum...
Jul 01, 2009
Rating
starstarstarstarstar 		My daughter did this
by: Anonymous

My four year old daughter has done this, also. About six months ago she started doing it, getting up from the toilet, pull her panties up and then go back and re-wipe over and over saying she was still wet. I took her to the doctor and was told she was severely constipated and this can cause the bladder not to empty fully, and then to leak. She stopped for a while, but still does the same thing occasionally. Today, she was diagnosed with SPD due to other issues she is having. Now I am beginning to wonder whether it was indeed part of the SPD. I don't know if this will be of any help, but just wanted to share what (kind of) worked for us.
May 08, 2009
Rating
starstarstarstarstar 		ongoing
by: Brenna

It seems that my daughter started this after many prescriptions for antibiotics which caused a yeast infection. Then the meds given for the yeast infection made her very dry and uncomfortable. Ever since then (about 6 months ago) she has been wiping excessively and complaining that she is wet. I am wondering if this has happened with anyone else? I can't figure out what started it and why.
May 07, 2009
Rating
starstarstarstarstar 		many thanks
by: Anonymous

I came across this page thru tears of frustration, feeling like a failure as a mom. My daughter is 12 years old and I have had the hardest time understanding the excessive wiping,often using a whole roll of toilet paper, tag cutting on clothes, extreme germ phobia. Thank you for showing me that we are not alone. I read someone's post that said they can "hop around" and one thing that bothers them one month may not bother them the next. With that in mind, is there any suggestions other than professional help? I have concerns about "forcing" my daughter to speak to a doctor about it and I am very leary of her being prescribed medications. (I've seen kids turn into zombies on some of the meds they prescribe these days.)

I don't want to make her feel like she is doing something wrong or in trouble. I have tried to explain/reason with her why she does these things and why they are unnecessary, but for some reason I can't get through to her. It's frustrating because she is a good girl. She listens and does what she is told, but when it comes to this, she thinks she knows better than me. Any suggestions? It's not that I am unwilling to take her to a doctor, I just was hoping that isn't our only option. Again, thanks for any suggestions.
May 01, 2009
Rating
starstarstarstarstar 		Thank you
by: Anonymous

We are taking her to a behavioral psychologist because it is looking like OCD. Thank you.
May 01, 2009
Rating
starstarstarstar 		Same thing here
by: Anonymous

Our 3 year old daughter first started pulling her pants up at the waist NONSTOP a few weeks ago and constantly complaining that her clothes didn't fit right. But she has NEVER shown OCD tendencies before that. Now, she has developed this wiping habit - never feeling dry, needed to wipe again after we've exited the bathroom and have her redressed. I tried the powder tip one mom left and we're seeing if that will help with the dryness issue - I'm hoping that summer dresses will ease her clothing anxiety for the summer so that she'll stop thinking about it. It's hard to think that the OCD develops so quickly with no prior tendencies.
Apr 20, 2009
Rating
starstarstarstarstar 		Sounds familiar!
by: Anonymous

My daughter is 9 years old. She went through the "my underwear feel wet, do I have to go potty, did I go potty, am I going to go potty?!?!" stage when she was about 4 and it returned when she was 8. She also had problems with clothes not feeling "right" and goes into huge fits of rage when she cant' get things just the way she wants them.

For the first 6 years of her life we were totally perplexed. I got so much advice from other parents about spoiled children and how their kids went through stages like that too. She went to numerous dr. appts. for phantom illnesses. And then...we finally got some answers about a year ago when my daughter refused to go to school because she had seen a boy throw up all the way across the lunchroom and she was afraid it was in her hair and clothes. I immediately called her school counselor and he referred me to a nearby psychologist who works with kids who have OCD. She has been in therapy for a while now, and things are finally starting to get a little easier.

I would STRONGLY suggest speaking to your daughters counselor or taking her in to your MD for a psychiatric eval. Kids often try to hide how bad OCD is for them and it can present differently from adult OCD. For example, it jumps around from obsession to obsession and one thing can drive them crazy for months, and suddenly not bother them anymore.

Good luck and if you ever feel like something is wrong, don't let anyone persuade you that it is a stage. I did and I will regret that for a long time. Trust your maternal instincts!
Apr 13, 2009
Rating
starstarstarstarstar 		me too!
by: Anonymous

OMG! Thank goodness she is not the only one, not that I would wish this on anyone. Has anyone has luck with therapy? My daughter is going to go next week. We are having her tested for allergies and candida also. I am beside myself with guilt. Please if anyone has suggestions, please post!
Mar 30, 2009
Rating
starstarstarstarstar 		baby powder?
by: Anonymous

Hi, I was wondering if she might feel better applying a little baby powder to her undies it might also distract her from the wiping habit. I can imagine with all of that wiping she'd have a bit of irritation that might exaggerate that feeling. Maybe an oatmeal bath and some powder would help.
Mar 30, 2009
Rating
starstarstarstarstar 		I'm going nuts, too!
by: Anonymous

I am a bit late on these posts but I am dealing with the same issues with my 5 year old daughter. Your posts are like taking the words out of my mouth; noting is comfortable on her, still feels wet, shoe are not right, socks are uncomfortable, too tight, too loose! OMG!!! exactly the same issues! Have you found a solution? DO I have an OCD child?
Oct 11, 2008
Rating
starstarstarstarstar 		Dealing with similar situation!
by: Anonymous

Hi, first I must say that I was totally blown away reading your post. My daughter does the SAME thing! She has been known to go through an entire roll of toilet paper trying to get "dry." I have even caught her stuffing toilet paper in her underwear, or even a washcloth, b/c she still feels like she is wet. She has also been tested to rule out any type of infection, and nothing appears to be physically wrong.

She has always had issues with clothing, tags, socks, etc. and things have become very difficult dealing with getting her ready for school everyday. Nothing feels good on her. She only wants to wear dresses, which doesn't work in the winter considering she won't wear tights either. She also stretches out her underwear until they nearly fall off her and has a terrible time riding in the car b/c of the feeling of the seat belt between her legs.

The tantrums are unbearable at times and we feel so helpless. I've never posted on here before, and I don't know if it's ok to give out an email address, but I would love to talk to you some more. I am just so amazed to hear of someone else dealing with the exact same thing! If you would like to chat, please email me at: abmommy09@yahoo.com

Good luck to you and your family!
Sep 27, 2008
Rating
starstarstarstarstar 		She Loves Her Mom
by: Stephanie Whitt

I think she loves her mom very much. First things first. It seems to be a case of Good Attention & Bad attention, from what I gather. Ask your self how often does she go to the bathroom with you & do you wipe a lot. If wet ones are used STOP.

Back too Attention. I had to work on that one myself. Children love any attention even the bad so make notes. If she is in the bathroom do not let her see you, & don't give in when she calls your name, unless she is so upset that it lasts more than 10 min. Also take lot of notes & watch her and find out if she is the same when she is getting out of the bath.

Start now as there will be hard work ahead dealing with SENSORY DISORDER/O.C.D. Talk with her DR. & ASK for O.T if you do not get the answer. Plan a day of phone calls or weeks as it is by far not easy.

Stephanie Whitt

Jesus LOVES YOU' KEEP up the GOOD WORK...

Click here to add your own comments

Join in and write your own page! It's easy to do. How? Simply click here to return to The SPD Q & A.