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Posted by Caryn Here is a link to my caringbridge site. I have sort of told my story from birth to Kindergarten and some the issues we have had to deal with. My pediatricians didn't know much if anytihng at all about this but they were able to refer me to some specialists that maybe didn't know about the disorder but assisted with some of the immune,palate, heart stuff. We were put in touch with a geneticist who knows about this disorder at Children's Hospital and she has been a great help in letting me know things to look for and specialists to see! Might be worth you time to look into finding one in your area that knows about this disorder to help you coordinate. Tho most of that coordination is done by me. We just meet with her to make sure nothing is being missed. Well, Hope this helps you! --Previous Message-- Link: http://www.caringbridge.org/visit/samvcfsstory
on 12/12/2006, 2:02 pm, in reply to "questions about 22q11.2"
64.211.101.4
Christy, Congratulations on your new baby! My daughter is now 5 years (almost 6) with 22Q11 deletion. I honestly don't remember 22.q11.? but most likely they have similar deletion in that area.
Caryn B.
http://www.caringbridge.org/visit/samvcfsstory
: My daughter was born 9/13/06 our
: chromosome analysis said that she
: had 22q11.2 or chromosome 22 partial
: tetrasomy 22pter. She has already
: had quite a few issues and i was
: wondering if any one could tell me
: what to expect. the doctors really
: have not been much help. Thanks.
: christy.
:
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