Anyone with Prader Willi Syndrome out there?? — The Bump
Special Needs

Anyone with Prader Willi Syndrome out there??

We saw a genetic specialist today who has recommended a whole batch of new tests for Isaac including an MRI and blood tests for Prader Willi syndrome.  Apparently he only had part of the testing for it before.  Is there anyone out there with a child who has PW syndrome who can give me some guidance on it??  Thanks! 

Getting a diagnosis is going to be such a long hellish process.  Its insane! 

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Re: Anyone with Prader Willi Syndrome out there??

  • I don't have a child with PW but I've had students with it. ?I can try to answer some questions if you have any......

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  • My cousin has it and I am an NP and have some patients with it. ?My cousin was diagnosed as a young adult because it wasn't really identified until the 70s (she is a lot older than I am). ?Treatment has come a long way for PW, and I think you would get a lot of good information from the Prader-Willi Syndrome Association website.

    Good luck with getting a diagnosis. ?Isaac is darling!

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  • They thought my son had it because he was eating so much formula.  Like screaming and crying if he didn't get 70 ounces a day.  It was absurd.  Turns out, he had a brain tumor on his hypothalamus that was causing these symptoms.  Definitely have your doctor do the MRI so you can rule everything else out!  Good luck! I'll be praying for your son!
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