I'm looking for anyone that has children with Prader-willi syndrome

bushg

I'm don't know anyone that has this syndrome. I have a son that has Nephrotic Syndrome a rare kidney disorder. So I may not know what you are facing with your child but I know that it is a scary and overwhelming feeling when your child or a child you know has been diagnosed with a rare disease. I found a website that may be helpful for you (if you don't already know about it)QUESTIONS AND ANSWERS ON PRADER-WILLI SYNDROME Hope this helps.

dmbailey

A friend of mine has a daughter with Prader-Willi syndrome. She is going to be 5 years old this year - beautiful little girl. How old is your child? Are you looking for information, or just for someone going through that same issues?

asking

I just talked to a colleague whose son has Prader Willi. She told me that she put him on a Paleolithic Diet--no grains, no dairy, no potatoes, no beans, no sugar--and he is much better.

She wrote to me on Monday, "The paleo diet has made him mentally and physically quicker. His body composition has changed dramatically. He is now 20% body fat as opposed to the typical 40% body fat of PWS. His hunger seems to have gone away and his weight has stabilized. It was quite miraculous for him. He is slim and tall and muscular and has met all of his gross motor milestones. He is almost 4 years old."

I hope this helps.
Asking