22q Deletion Interest Board: diGeorge syndrome

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diGeorge syndrome

Posted by Becky on 5/7/2008, 8:18 pm
207.190.127.108

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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diGeorge syndrome - Becky 5/7/2008, 8:18 pm
- Re: diGeorge syndrome - Jody 5/11/2008, 1:03 am
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--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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