Has anyone had experience with something called Prader-Willi syndrome? My sister has a little boy whom she adopted at birth. The problems she's dealing with include my nephew's rapidly increasing weight, his constant (and I mean CONSTANT) eating, some academic issues, as well as behavioral issues. They've been from doctor to doctor to doctor trying to figure out what's going on. Right now, he's been diagnosed as ADHD-Inattentive as well as having Pica behaviors.
From the little I've read in regards to PWS, my nephew appears to fit the profile for this syndrome.
My questions are: has anyone had the bloodtest done and was it covered under their insurance? I think it would be considered genetic testing because it is a genetic syndrome. When the testing was requested, what was the reaction of the doctors? My sister is concerned about pursuing this path because of cost and reactions from the medical community. I'm not trying to overstep bounds but I think that this s an avenue that needs to be researched for my nephew's sake.
Any information would really be appreciated!

Lizzie

No, I've never heard of this condition before. I'm sorry the little guy has to go thru it and your sister. I will definately ask around to see if anyone else is dealing with this and will get back with you.

Hi Lizzie,

Yes, I've heard of it and even seen medical shows on it, but don't know of anyone who has dealt with it. How devastating! I'm sorry to hear the news, in addition to the problem of not being able to find a doctor to care for him. I just Googled it and there seem to be a lot of sites out there concerning research and support. If you haven't already, check it out: Prader-Willi Syndrome[/URL]

There has to be a doctor out there somewhere that can help your sister and her son. Keep us posted!

Hugs,
Kell

Lizzie, yes I've definitely heard about this syndrome. My good friend used to volunteer at a health care facility and the woman she was paired up with had this syndrome. From what I understand - the behavioral issues do go hand in hand, because the person will constantly feel hungry and will do Anything to eat again. The woman she was paired up with still went home on occasion (she was 27 I believe) but she was constantly having fights with her mom because in some issues she was OK but with other issues (anything involving food remotely) she was very much like a child. These folks become very sneaky much like a naughty child because of the syndrome. I remember the woman would tell my friend (after her mother just told my friend that she had a full lunch - No more food) that her mother didn't feed her lunch and could they go get food? She also had to have locks on all the food cabinets/freezers/fridge, etc. anything dealing with food because this woman would literally eat herself to death. I'm not sure if there are different 'levels' of this syndrome but I'm not sure if these folks are ever able to live on their own because they will eat themselves to death and must be constantly monitored. That's what happened in my friend's case, the woman ultimately moved out of her mom's house and into this facility because she could never live on her own but in other areas was quite adult. A very frustrating situation for all involved I'm sure.

I'm sure it's imperitive that your sister definitely get her son tested. I'm not quite sure what you mean about the medical fields reaction - from what I know about this syndrome it is very serious indeed. Please keep us updated.

Wow! I've never heard of this syndrome but it does indeed sound serious! I do hope your sister can get the help that she needs regarding your nephew. Keep us posted!