How do I get my doctor or doctors to take me seriously?

by Ursula Gates
(Hampton, AR United States of America)

My daughter's name is Haley and she is 9 years old. She has had problems since birth that are similar to what I have read.




After begging the school for over a year to have her evaluated for sensory disorders I finally got the results. She scored -2 below the mean on almost all of her Sensory Profile. Below average on fine motor precision, fine motor integration, and manual dexterity. Well below average on upper limb coordination. Her visual perception is below average in basic and complex processes.

Her assessment was that Haley exhibits visual motor, coordination delay, visual perception delay, sensory processing difficulty, and motor coordination delay. She is getting 60 minutes a week now for occupational therapy. She has been in speech and language therapy since pre-school for 60 minutes a week. Her speech therapist said she has an articulation disorder.

Does this mean she has been diagnosed or will a doctor have to do this? I sent the results to my doctor and he has not got back to me. She is supposed to be evaluated by a developmental pediatrician. I sent off the paper work in mid-January. They said it would take about two months to get an appointment. It has now been almost three months.

I do not know what to do anymore. I am so frustrated! It seems her sensory problems are getting worse. She has also developed tics (rapid blinking and neck twitching) since last summer. She is progressively using hand-flapping and running from one room to the next over and over even after I make her stop. Her doctor says she will outgrow this, but it seems to be getting worse. All the private occupational therapists around here (which are very, very few) have a waiting list a page long. What to do? What to do?

Also could this be a sign of mild autism or mild cerebral palsy? I also wanted to add that when she was born she was not breathing for a couple of minutes. Could this have caused her problems? Could this be diagnosed as traumatic brain injury? She was born at 37 weeks 6 days.



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Sep 23, 2016
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starstarstarstarstar 		Kendal Stewart MD
by: Anonymous

Has anybody else had interactions with Dr. Stewart? We are interested in your child's progress since these posts are older. You can email me at tomlilly@bellsouth.net.
May 05, 2010
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starstarstarstarstar 		UPDATE about daughter.
by: Ursula Gates

Thank You everyone for all your suggestions. It was over two or three years ago when I first wrote that. We have learned so much more since then. First of all she does now have a pediatric neurologist. I have hours of tape on my cell phone. I actually need to go through and delete some of them. She was diagnosed with high functioning autism. Her sensory needs are inconsistent. It really depends on if someone causes her to have a meltdown and then the whole day is ruined for her and everyone else around her.

I actually had to call the pediatrician myself to get there attention. They thought at first she was having seizures, but her neurologist thinks transient tic disorder. I think Tourette's because this has been going on since she was 8 and now she is 11. It is different movement than the autism. It is like jerking, but seizures have been completely ruled out. Her neurologist has put her on clonidine and that has helped her tremendously.

It is true and will always be true I am my daughters biggest advocate.

To Miz Woody I took that advice ya know to call and call and call. They got tired of me calling alright. They forwarded me to psychiatry one time. LOL! I was trying to make a neurology appointment on that day. That was last year. I finally got tired of being transferred from one Dr. office to the next office and told them phone tag game is over. This is the last time I will call and have the neurologist call me back by today or I am going elsewhere. She called me back in less than a hour.

I have kept a very detailed diary to the point I think her neurologist gets so tired of hearing me talk about it. I have worked on that not to give to much information cause sometimes I have trouble articulating my daughters problems and I think most of my problems with my daughters neurologist is a communication problem. So I try to keep it short and sweet. She is foreign and I can tell English is not her first language.

The Dr. Kendall I sure is a great doctor and all, but I have learned to stick with what is working for ya. For now things are going good with her doctors and all. Not only that but Austin, Texas is just way to far for me to go. I will look at the website to check it out anyway. Thanks!

Her biggest problem right now is with being bullied. I have done and have read different things to do about that. I have talked with the teachers and the principle. They don't understand that she gets overwhelmed on the play ground and cafeteria. It is hard for her to process what is going on around her. I have been seriously thinking of home schooling her next year. Any suggestions about bully's or home school??? Need help with it.
May 01, 2010
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starstarstarstarstar 		WORKED for us!!!!!!!!!!!
by: Bridgette Brandon

My daughter is 3yrs old and I went through the same issues. However this my help... keep a video camera & a VERY detailed note book of all incidents (Write what happened before, during, and after). Once I was able to show the Drs. what was going on visually & on paper they FINALLY started to help me and point me in sokme good directions! She now is enrolled in the local elem. school 4days a week & she gets OT 1x a week at home!

Hope this helps!!!!!!!!!!!!!!
May 01, 2010
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starstarstarstarstar 		in response to your post
by: Anonymous

There is a wonderful world renowned doctor and who is a sensory specialist, My entire family has had sensory issues along with autism and Asperger's syndrome. But here is his information He is one in a million and highly recommended.

He is in Austin and out of Trophy Club TX

Neurosensory centers of America
Dr.Kendall Stewart
Trophy Club, tx
www.neurosensorycenters.com

NeuroSensory Center of Austin
Kendal L. Stewart, M.D. Doctor Bio
Wallace E. Taylor, Jr., M.D. Doctor Bio
300 Beardsley Ln.
Suite D-101
Austin, TX 78746
P: 512.338.9840
F: 512.338.0863
Website
Map It!
Apr 23, 2008
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starstarstarstarstar 		Doctors
by: Alexis

You are right about Texas and sensory processing disorders. Stick to your guns and get the best you can for your child.

Use the sensory profile and you can begin playing. Usually they will gravitate towards certain sensory toys that give them the input they are seeking. You can use that and create a pretend play scenario with it.

Build a sandwich with pillows for pressure. Add a play salt shaker and pretend to put mustard or mayo on them when you use the pillows as the bread and turn them into a sandwich; or a pizza, whatever they prefer. My son loves it. I make sure that he can see me though. It's also helping them to think abstractly by turning a pillow or a bean bag into something different.

Apr 23, 2008
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starstarstarstarstar 		Doctors
by: Anonymous

I printed out a list of SPD symptoms that fit my 9 year old son and was finally able to get a referral to a developmental pediatrician. It should not have been this hard but it was. I wish my son could have been diagnosed and started therapy earlier.

My son's sensory issues sometimes caused him to shake his hands when he got overly excited. He was able to explain to the doctor that it felt like he had excess energy in his hands that he needed to get rid of. He was finally diagnosed with motor dyspraxia and he started receiving OT to help with proprioceptive dysfunction.

He occasionally had motor tics when he was under a lot of stress--like when his acting teacher raised her voice because a few of the kids were not learning the dances fast enough and he was already doing the best he could.

I just wish I knew how to make other people understand, now that we have the diagnosis.



Apr 21, 2008
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starstarstarstarstar 		I agree..
by: Jessi

With the others who responded. In this day and age you have to be your kids' (and your own) advocate. Once you get in with the developmental pediatrician (I think that's what you said - that's who I took my son to), I think you'll see some progress. The Dr. I took my son to really thought he qualified for services through the school system, but she warned me that it wouldn't be easy. Her advice to me was to pick a certain day of the week and call every week until they understood that I wasn't going away.

Fortunately, I was able to get him in without quite that much trouble. Don't know about other states, but in Texas, the sensory problems don't qualify for school services, because they aren't viewed as deterents to learning. Crazy isn't it!!! How can you learn when EVERYTHING around you is distracting or downright painful!?

Anyhow, my son has speech problems and that's how I got him qualified. And the way I understand it is once you're in, you're in. My son is just about to turn 4 and now I'm enrolling him in headstart. As for the private therapy... I would get on all the waiting lists. Once you get your developmental dr.'s assessment, you'll be able to bring that with you to the first evaluation. They'll still make their own assessment, but that's even better. I used both to get my son qualified for school services.

The private therapy is really great because it's so one on one, and at least with the speech therapy - I see that the private therapist and the school therapist work from different angles, which I think is really working well. Just be politely aggressive.

My son's pediatrician never picked up on any of his problems, but when I told him I wanted an evaluation by a developmental dr. (I had read about it) he got me a referral and we got right in. That lady was a Godsend. She saw EVERYTHING I did right away and got us the help we needed and told me who to call and what to say. I really hope for you and your daughter's sake that you are able to find the help you need.

In the meantime - make consistency the number one practice in your house. I'm not talking down to you if you already do this - but I saw a dramatic change in my son when I built routine into everything we did. And lots and lots of verbal warnings before we did something out of the ordinary so he knew what to expect. We don't go to loud restaurants (or any really) very often, and I try to keep things that bother him to a minimum. Let the therapists work on increasing the tolerance to things, so that you and your house can always be safe to your daughter. Make sure she always knows what to expect when she's with you (as much as humanly possible).

Good luck! You're doing an awesome job - keep fighting for everything both of you deserve.
Apr 19, 2008
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starstarstarstarstar 		Get Your Doctor's Attention
by: Miz Woody

Have you heard the old adage, "The squeaky wheel gets the grease?" It's true.

You don't have to be offensive. Be polite, but be persistent. When someone tells you it will take two weeks, give them a week and a half, then call to see if they are making progress. Call the next week. Then call every three days. They will put you at the top of their list just to make you stop calling.

Also, get the name of the person you talk to the first time. The next time you call, ask for that person. Ask them how their day is going, empathize with them about their workload, their sciatica, whatever. You want them to (a) remember you and (b) like you so they will (c) help you!

If they can't help you, ask them who can. Maybe it's the next person up the chain of command.

Keep notes. Log your calls with date, time, person you spoke to, what was said, what was promised. The next time you call, remind them of what was said or promised.

This sounds hard if you are young and/or not very confident. Do it anyway. Your child needs YOU to be her advocate.

Blessings on you!
Apr 18, 2008
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starstarstarstarstar 		Doctors taking you seriously
by: Alexis

First, hand flapping and twitching sounds like possible autism and sensory processing disorder. Our son ran back and forth would twitch and tighten his whole body and hand flap.

So through Floortime we learned to turn the running back and forth into a game. This makes it purposeful and you can say follow and run with her or get to the corner first. Twitch too and turn it into a dance. This is how you can start engaging her whether she has sensory processing disorder, autism or both.

It will help to get her engaging. You use a gestural very simple communication system. Still get her checked out. But, in the meantime you can start engaging with her now.

When my son twirled strings and paper we did it also. Turning the twirling string into a slithering snake. Be very animated and use gestures and use a calm voice.

Trampolines are really great and help with the need to move ,and pillows are fantastic for crashing into or playing sandwich. I use the pillows to help my son feel where his legs and arms are.

Eye twitching and things... get that checked. For now use this as a simple way to engage and play with her using her running back and forth as a game of chase.

Use smiles and gestures. I found that when my son was feeling like he couldn't do those things he got worse. When I made it purposeful and a game, of say, eye winking... you eye wink and twitch back, things improved. Also for the hand flapping be trees or the wind. Pretend you are the wind and do a dance, or become a tree flapping its branches in the wind. It will seem silly at first. Try that after you find a good doctor. We had a run of bad Nurse Practitioners and Speech and OT's... you want to check out Michele's page on this site on Occupational Therapy/Therapists, she has great advice on that.

In the meantime also observe when she does these things; is there a sound she is over reactive to? Or light or a food sensitivity? Check into that as well. Hopefully this will help.

It may take some time to find the right doctor don't give up and be firm. That's what it takes. Remember a gestural communication system; very simple gestures because gestures are the foundation for speech. Maybe putting a toy up on a higher shelf where she has to interact with you to get to that toy ,food ,or activity.

Check on her diet, any sensitivities to her environment. Check into a sensory diet for home ... ask your OT, and check this site for that too (see the newsletter page; click on the back issue regarding sensory diets). Sensory Room; that's always a great idea too.

Start simple hand gestures for drink and eating. You can start simple like say, to help with emotions. Liam, my son's name, is sad. Make a sad face and gesture... be animated. Or Liam wants juice. Make a gesture of your hand being a cup going to the mouth for drink and so on.

That should help you out.

www.floortimerepository.com

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