What we all know about syndroms is that they don't affect kids the same way. It's a syndrome because the symptoms carry from kid to kid. Each kid will have different issues and no two kids will look the same, have the same needs, etc. This is the case with Matthew and Christopher. They have the same types of delays but Chris' are much more severe.
We were told to up Chris' speech and PT in the school day. I doubt we'll get it easily. We are to call her in April to discuss placement for next school year. I think what we're going to do with Matthew is wait until George and I get our results back and then test Matthew for the 16p11.2 syndrome.
This was the best picture I could get while we were driving since I had to nagivate too. George wanted me to drive and I ended up crying. No way in hell was I driving in New York City!
2 comments:
Wow it's interesting to see someone else going theough the genetics testing as we are here. Most people I deal with scratch their heads when I tell them we did testing on my 10yr old and now we are doing it on us and the other two girls. What does the 16 del mean for your child? My daughter has 3p26.3 deletion (hope I got that right, been awhile since I typed it lol!) we have no clue how hers affected her because she is severely autistic. Hoping testing on myself, hubby and the other two girls shines some light on this for us. Hope you get some good useful info as you continue your genetics testing.
http://lifewith4men.blogspot.com/2010/08/multiple-posts-home-from-genecist.html?showComment=1281676720766#c7949938694643526775
We had a lot of info from this appoitment. Unfortunately, we knew more than most doctors did with the initial appoitments. Our first developmental pediatrician told me I knew more than he did and the initial geneticist told us he knew how genetics work but now how the 16p syndrome would affect Chris. We drove to Boston because that was a doctor who knew about the 16p syndrome. Have you tried the Unique website or the Unique group on facebook? They were a great resource for us.
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