melissa&dave
9 posts
Mar 11, 2010
8:39 PM
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I just wanted to update everyone about my son who is 5 years old he was diagnosed with a hearing loss at the age of 2 and a half he wears bilateral hearing aids with a moderate to severe loss in his right ear and mild to moderate in his left ear. He was diagonosed with coats disease back in Aug 2009 and since then he was just diagnosed with FSHD (facioscapulohumeral dystrophy) I wanted to post this so others will look further into this and be aware of this muscular dystrophy that ties in with coats disease. Please google this fshd to learn more about it, we have been looking into this and not to many doctors have put all this together so i have notified them and they were very interested in this study...Thank you and i hope this helps you all!
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tiffanyntaylor02
1 post
Apr 25, 2010
8:12 PM
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how did you find out that he had FSHD ....my son was tested by bloodwork and thye said it was all normal, does that mean that everything should be okay? i looked that up awhile back and he doesnt have any of the symptoms, but was just checking.
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firemom
47 posts
Sep 03, 2011
7:53 AM
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Melissa&Dave,
My son just recently saw a orthopedic specialist and is sending him to s nuerologist as he thinks he may have FSHD. What did your son have to go through for the testing? Have you had success and what were the symptoms that led you to FSHD??? We have to wait until Nov. 23 and I want to know everything I can before I go so I can be prepared to ask the right questions. Where is your son being treated?
Thanks so much! We thought we were all set for understanding what he was to expect with coats and this is a pretty major curve ball!
Heather
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