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Posted by Jody on 5/11/2008, 1:03 am, in reply to "diGeorge syndrome"
71.164.158.132
Becky,
If you go to www.vcfsef.org you will find that they have a brochure that the foundation will send you for free. You can get several to give to your doctors and early childhood intervention people. Also on the site they have a listing of books that have been published about VCFS. Chromosome Central also cites medical journal articles about DiGeorge, VCFS, 22q etc that you can give to people to look up at the medical libraries if they need something really technical.
Children's Hospital of Philadelphia (CHOP) has a VCFS clinic and a book called "Faces of Sunshine. I forget the contact info but I think the clinic is called "22q and you". You might even want to go to CHOP and get full evaluation done some day. I hear it is a very comprehensive one that will help determine how to help your child and how to understand how VCFS affects him.
The syndrome truly effects every child differently.
Best wishes!
Jody
--Previous Message--
: Hi! My daughter is 1 year old and was
: diagnosed last month with diGeorge
: syndrome. She had a multitude of
: issues that our doctors attributed
: to her heart condition. After much
: researching on our part, we pushed
: for testing. Now that we have our
: test results, nobody really acts
: like this is important. She gets PT
: once a week and ST every 6 weeks.
: We have started sign language with
: her. It just seems like we a have a
: lifelong battle ahead of us without
: anyone who is knowledgeable. Any
: advice for us? Thanks.
:
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