Therapy in the Seattle area, WA State?

by Heidi
(Des Moines, WA)

My son will be 5 next month and has severe sensory issues. He's been G-tube fed since he was 2, went straight from breastfeeding to the tube. Never took to solid food as an infant. He is very oral defensive, teeth brushing, hair combing etc... is still all very difficult.

He's had years of feeding therapy, both one-on-one and group settings, without any success. He's also had SI OT, although a lot of fun--we didn’t see any success there either.

Jacks OT just started brushing with him and he screams, even while over his clothing, he doesn’t tolerate it well. The joint compressions are too painful so we discontinued those.

Heidi, since you live in the NW, can you recommend a program in our area that’s successful for kids as extreme as my son?

For the most part I’ve given the feeding therapy a break, just too disappointing and we’ve spent so much $$$ without any progress. I’m not giving up, just that we both need to take a break!

Along with the sensory stuff, Jack also has a few other health issues so he's a bit complicated but I would love to find another program soon and could really use a recommendation if you know of a good place or therapist in my area that works with EXTREME cases! :)

Thanks SO much, any info is appreciated.

Many hugs to your kiddos-

Heidi and *Jack, 4.5 yrs, Unspecified Congenital Myopathy, 35wkr, Hypotonia, SPD, Food Aversion/Texture Sensitivity, Hypermobile, Fine/Gross-Motor Delays, Fatigue, Reflux, Slow Motility,
99.9% G-TUBE FED, and also happens to give the biggest hugs and the sweetest kisses!

The SPD Help Line Answers…

Heidi,

You have your hands full to say the least, and I send KUDOS to all your hard work so far!!

All of the therapists that I spoke with asked if you got along with Gay Lloyd-Pinder at CTC in Kent.

If yes, they suggested you have Jack re-evaluated and maybe write a letter to send before you meet up with her again, stating that in all the months of therapy there was little or no progress on Jack’s part and maybe a different style or type of therapy might work better, and you would like to give it another try.

I know with Gage his first year we saw very little progress, and we got him re-evaluated by the EI (early intervention) therapist. She, in turn set us up with his pre-school teacher now,. Trish (the teacher) worked and worked with Gage then found something that sparked his interest, singing....

Trish sang everything to Gage, form this is the way we wash our hands, to this is the way we eat our snack! For two years she sang everything. We implemented this at home, as well as with his OT, SLP and even at his Doctor’s appointments.

What a difference it made. There is a saying, if your child is not learning it's not his fault it is the teacher who must teach, and be able to reach to teach. Maybe Jack just needs a different approach.

As for his picky eating, our Pediatrician says it is only spoiling when you do what you DO NOT want to do. If you can handle how he eats now then so be it. If you need to focus on SID/SPD and feeding via G-tube works then just focus on the SPD. Once that starts coming around then you can take on another task of introducing foods. This is just my humble opinion, but with all my kids gastro problems and FTT problems, sometimes it is just so overwhelming for US and for the kids.

Harrison (my oral sensory kid) ate nothing but mac ‘n cheese or spaghettios well over a year, to the point where I would feel sick just smelling them, but every once in a while he tries something new and we are veryyyyy happy! (A great book to follow for picky eating is Just Take A Bite… written by an SLP and OT with some great explanations, tips, specific suggestions, and resources.)

If your still worried about Jack's eating habits (even when asleep via G-tube) I say make a video of it. I wonder… how does a child gag in his sleep? There is probably something else going on and by taping it you can show the doctors first hand what is happening. (Perhaps it is related to the reflux or sleep apnea??)

I don't remember if you have a sensory diet set up for Jack, but that should be on a top 5 list of things to do. You don't have to do every item every day but some everyday; the more it becomes routine the easier it gets. Since Gage broke his leg 4 weeks ago we have upped his brushing to 6X's a day, and I have come into a room and seen Gage Brushing himself!

The only other option for Des Moines area would have to be CTC in Kent or CTU out in Puyallup. I almost think Puyallup might be better as they are the head in Washington State. Maybe they would have private therapists for you to contact. I have a call into a gal out in Gig Harbor but that might be a tough drive with 4 kids? If you want her number I can get that for you. My neighbor, who's daughter is severely handicapped, goes out to Gig Harbor and really likes the gal.

And if you can manage this seminar in April I have already signed up, it is run by a couple of Gals who were in Private therapy for years, I hear nothing but kudos about it from the therapists who work with Gage. http://goodsamhealthcme.netreturns.biz/Events/Detail.aspx?EventId=1077a6fe-1178-4cf8-b3e0-971baaf7b153. From what I have read and from speaking to Normajean @ CTU this seminar is supposed to be wonderful!! It's kind of spendy but your Pediatrician might be able to write a prescription, since it is therapy. I just know I learn a plethora of info from these seminars, always something new. Check it out via the link above… maybe we can get a discount for a group here in WA. I'm willing. It's April 12th & 13th (Sat. & Sun) 8:00 to 4:30 both days. Sign up quick because these classes fill fast!

Please let me know if I can help with anything else, even to meet for a play date once it stops raining!!

Take care,

Heidi
SPD Parent Share Host Washington State