New to group -- our 8 year old boy was officially diagnosed

December 14, 2011

Hi everyone! My husband and I have two children, a typical boy who will be 10

next month and a son, , with DS and " classic " autism (diagnosed in October)

who is 8. He'll be 9 in February. We are really struggling as he is getting

harder and harder to deal with. He's extremely low on every developmental

scale. His recent evaluations put him at 1 year, 4 months at the farthest in any

area, with communication at about a 6 mo old level. He's tiny too, at about 39

lbs and 39 " tall; he's in 3T pants and size 4 shirts. We've ruled out any

medical reason for his tiny size (thyroid, growth hormone, Celiac disease). He

does have an immune deficiency. He doesn't produce the antibodies that fight

bacterial infections, so he gets monthly infusions from a home health-care nurse

to help with that.

We have a few issues that are at the top of our concerns list. bites

himself deeply and has bloody open sores all over his arms and hands. We aren't

sure what is troubling him. He lost his first two teeth in the last few months

when this got suddenly worse, so we suspect that may be related. We have to

keep his arms wrapped up in that no-stick bandage stuff covered with sports

tape, then put him in these arm splint things that hospitals use on

babies/toddlers so they can't get at surgical sites. They're commonly called

No-Nos. Any opinions on why he might be biting so much? Or what we can do to

help him? There are no new teeth growing in the empty spaces yet.

Concern #2. 's currently in a crib but is outgrowing it. We don't think

he'll stay in a bed on his own. He tears apart his room when he's in there

alone, and we don't want him to destroy the other furniture in there. He likes

to bang on stuff with whatever he can find that makes the loudest noise. Any

advice on what kind of bed we can go to that will keep him contained? We need

him to stay in the bed not only at night, but also during the 4 hour long IV

infusion he has monthly. Traveling is also a major concern as he really is too

big for a Pack N Play like we are using now. Advice??

Thanks very much.

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