Community› The Bump Message Boards› Special Needs
Special Needs
New Discussion

Anyone with Prader Willi Syndrome out there??

Pierce3252Pierce3252
in Special Needs

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! 

Image and video hosting by TinyPic Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker BabyFetus Ticker
Report Reply to Post

Re: Anyone with Prader Willi Syndrome out there??

  • Julee018Julee018 member

    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......

    ?

    Report Reply
  • erinmserinms member

    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!

    Report Reply
  • Loading the player...
  • SJC1984SJC1984
    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!
    Report Reply
This discussion has been closed.
Choose Another Board
Search Boards
"
"