Tuesday, April 20, 2010

Updates Galore!

Yesterday we had our first appointment with Trevor's new psychiatrist. She is located just a few doors down from the hospital that Trevor was just at. Karl was a bit apprehensive - worried that this wouldn't go well. Well, he couldn't have been more wrong. The new doctor is FABULOUS! She is funny, she has a great personality, she is good with Trevor, she is knowledgeable. It was such a relief! Phew!!!

She isn't going to change any of his meds at this time, since we are seeing such great changes, she doesn't want to mess with what is working! Woot! She doesn't feel we need to even consider the Prader-Willi anymore, because with the removal of one of his other meds, his appetite is getting back to normal and he's loosing some weight. Phew again! Another weight lifted off my shoulders.

So unless something comes up between now and then, we don't need to go back for 6 weeks! Thank goodness!

Today we had our first meeting with the Occupational Therapist. Everyone I talk to, can't stop singing her praises! From what I've been told, she's the best around here. I love that, because I want nothing but the best for Trevor and that includes his providers!

She did some testing with Trevor - some written and some physical. I have to admit, that some of it was painful to watch. It's hard to watch your child struggle with something as simple as catching a ball - esp when his 2 yr old sister can do it with much greater ease. I am so worried that he's going to get picked on as he gets older and the kids start noticing his "quirks" and differences more. I don't think I can possibly bear to see kids picking on him. When she tried to play catch with him, he was so stiff. He doesn't follow the ball with his eyes - he just cups his hands/arms in this awkward position and stands there stiff. She had him try to throw the ball at a target - a rather large target and he couldn't hit that either. She had him try to do jumping jacks - again, he just isn't coordinated enough to put the movements together. He started complaining how tired he was and how hard that was.

Anyways, that's just a sample of how things went.

She said he's very anxious - stresses himself out about things. He has low muscle tone - very floppy and yet at times he gets so rigid because of it. In the end, there was more, but right now it escapes me and I don't have the notes in front of me.

She said he has "Sensory Processing Disorder" with the focus on the vestibular system of the inner ear, which affects balance and gravity response, and muscle tone.

She gave us a list of things to do/read/get and start doing all that and she is going to work him into her already full schedule.

She said right now to not even think about sports - I thought maybe a group sport would be a good idea for him, but with his lack of coordination, low muscle tone, that fact he has no idea of where he is in terms of space, the fact he doesn't focus on the lower quadrant, she said it would not be a good idea. She said if anything, just try to see if we can get him to try a bike.

All in all, it was so nice to have a confirmation of the things that we suspected. It was nice to leave knowing I am not crazy. I am not imagining it.


1 comment:

  1. Our developmental pediatrician (that specializes in children on the autistic spectrum) does not recommend group sports for children on the spectrum. Instead, due to Will's ADHD and significant SPD, we enrolled him in Karate, and he is excelling in it! An individualized sport gives them self-confidence (something Will greatly needed), focus, balance and coordination techiniques, and there is no "team" involved. I've read many articles about how it helps children with issues like Will's. He can't do a jumping jack correctly, but boy does he try! Just a thought!