Monday June 13th and Tuesday June 14th were the two days that Amie and I were at University of Washington for the Simons VIP research project on her syndrome.
The majority of the morning I was in with a gal named Katie answering a ton of questions about Amie. I had already answered a huge number of questions before we went out! About a half an hour before we were let out for lunch, they let me join in a room that was behind the room she was in. This was the "control" room where they were video taping her and Dr. Beau.
I got to watch Amie doing her own thing through out the visit. When Dr. Beau asked if the baby was hungry, she would pick the baby up, and put it down and go back to what she was doing. When he asked if she could feed the baby, she ignored his request. When he put the playdough on the fork and said the baby was ready to eat, she pushed the fork away.
Dr. Kelly talked to me about how the morning had gone - seems that Amie gave quite the performance of being completely non-compliant for the first half of the visit & then like a switch turned on, she started cooperating. Even though she was cooperating, she definitely showed her independence and stubborness!
In the afternoon on Monday, we went through similar stuff -- more questions for me, more interactions with Amie. Then she went to see Dr. Steinman, the neurologist. We were with him for two hours! Man - she was DONE with cooperating by then!
Tuesday morning, we attempted to do the MRI. They can not sedate kids in a research project, so it has to be cooperation (yeah I know - Amie doesn't really know the meaning of that! LOL) But we gave it a good attempt.
About an hour into it & it was obvious she wasn't going to cooperate. We got as far as getting earphones in her ears while she laid on the floor listening to the movie & then eventually she got on the table and even let the coil get slipped up over her head and watched the movie a bit, but not laying still and not allowing the ear phones in. We finally decided enough was enough.
Then we went over to the Medical Center and had blood drawn. That was very traumatic for her - even though she gets her blood draw at least a few times a year, this one went pretty poorly. I think the majority of the reason was the bed wouldn't lay flat, so she was harder to hold.
We then came back to the University area and she had pictures taken of her head, feet and hands.
Then it was time for the skin punch biopsy. They put a bandage on her arm with numbing cream under it. Then 15 minutes later they took her back. The skin biopsy actually went better then the blood draw. I held her head, arms and upper body. Hannah (one of the Simons team) held her feet & the doctor did it very quickly. It didn't hurt her because of the numbing cream and the only complaint she had was that I was holding her!!
Saying good by to most of the Simons team!
After we said good bye to most of the team, we headed across town to the Children's Hospital & she had a 3D picture taken of her head.
She had to have a funny stocking net type thing put on her head first.
Before we left for the Children's Hospital, Dr. Ari gave me a brief run down of what they learned during the two days. Even though I was expecting most of what she had to say - it was still emotionally draining to process it.
Amie meets the diagnostic criteria for PDD-NOS. If that doesn't sound familiar - it is what Tim's diagnosis was when he was 14. PDD-NOS means Pervasive Developmental Disorder - Not Otherwise Specified. It is under the umbrella of ASD - Autistic Spectrum Disorder. I really expected her to wind up either being diagnosed with something in ASD, or at least with at least part of the characteristics of ASD.
The next thing she told me was that even though the DSM does not allow for kids to have a diagnosis of both ASD and ADHD - she felt the DSM would be changing in the near future because of several reports that have been published. Anyway - she stated that she definitely sees components of ADHD in Amie and also ODD (Oppositional Defiant Disorder). The ODD is what threw me the most. As she explained what the hallmark items are in ODD - the item that she stated was pretty classic was the kids that are the first to repeat naughty behavior in school. We had sent Amie's report from school that said the one thing that is very obvious and very regular is that if any other child in the classroom does something wrong, Amie is the first to fall in and repeat it. The other child or children will stop, but Amie will continue the behavior for a period of time.
We will get the formal report in about 4-6 weeks, it has given me a lot to think about. Including she thinks that Amie should be having OT or PT and speech more then she is right now. Last time Amie saw the OT, they said she was pretty typical. But according to the group at Simons, she has definite fine motor issues that aren't horrible, but could be worked on to improve.
I've already started making phone calls to see if we can get her into some therapy this summer.
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