Messages By: joyceopp

Joyce, thanks for your reply.  She was diagnosed PWS back when she was two.  Her mother wouldn't allow any treatment.  As I said now she is diabetic, with uncontrollable sugar.  Only when she's with her Dad does it seem to be controlled.  We watch what we allow her to eat, and she does satisfactory with that.  We've never locked food up, and she's never attempted to steal it...I think her Mom does though.  Her Mom has the control, and will not allow treatments other then the insulin.  She also seems to make the child sicker then she really is by taking her to the doctor, ER or Medcenter almost weekly.  The girl cannot even toilet herself properly, she needs help.  She is in a special education program which seems to be helping with social skills, but Mom is trying to get her out of it.  Seems the Mom has control and wants the child to forever be dependent, or almost as if she can't wait for her to die.  As I said, I have a hard time even knowing about the situation.....it has got to be hard.  My heart goes out to you as a caring mother of such a child.   

When I saw that Prader-Willi Syndrome would be the topic for Dr. Phil’s show I was surprised. The syndrome is rarely mentioned except in extreme cases.  I wish the whole hour could be devoted to Prader-Willi.  I trust that there will be resources and links to offer support after the show airs on Thursday.   

My nephew Scott was diagnosed with PWS in 1975. Only 20 years since it had been discovered, Scott’s disorder was somewhat rare when he was born. He was a failure-to-thrive baby and had poor muscle tone. Doctors thought he had cerebral palsy and would never walk. He walked when he was almost 3 years old. His speech was affected because of poor muscle control. Scott was always patient with us when we had difficulty understanding him. Scott started gaining weight when he was 6 or 7. My sister and her husband were faced with many trials and tribulations with Scott as he went through puberty. He attended a day treatment program that helped him become a caring, kind man.  He was active in Special Olympics. He traveled with my sister and her husband everywhere. Scott became a popular young man in his hometown. With love and guidance shown to him, he rarely had the tantrums that are known in Prader-Willi children. 

Scott brought our family so much joy and we were better people having had him in our lives for just a short time. Scott died in 2004 at just 29 years of age. He developed diabetes and deep vein thrombosis. His parents are still trying to deal with this terrible loss. Our family will never be the same.  Scott gave me wonderful gifts-- love, laughter and acceptance. Wonder and innocence and warmth.  

Sharon 

When I saw that Prader-Willi Syndrome would be the topic for Dr. Phil’s show I was surprised. The syndrome is rarely mentioned except in extreme cases.  I wish the whole hour could be devoted to Prader-Willi.  I trust that there will be resources and links to offer support after the show airs on Thursday.   

My nephew Scott was diagnosed with PWS in 1975. Only 20 years since it had been discovered, Scott’s disorder was somewhat rare when he was born. He was a failure-to-thrive baby and had poor muscle tone. Doctors thought he had cerebral palsy and would never walk. He walked when he was almost 3 years old. His speech was affected because of poor muscle control. Scott was always patient with us when we had difficulty understanding him. Scott started gaining weight when he was 6 or 7. My sister and her husband were faced with many trials and tribulations with Scott as he went through puberty. He attended a day treatment program that helped him become a caring, kind man.  He was active in Special Olympics. He traveled with my sister and her husband everywhere. Scott became a popular young man in his hometown. With love and guidance shown to him, he rarely had the tantrums that are known in Prader-Willi children. 

Scott brought our family so much joy and we were better people having had him in our lives for just a short time. Scott died in 2004 at just 29 years of age. He developed diabetes and deep vein thrombosis. His parents are still trying to deal with this terrible loss. Our family will never be the same.  Scott gave me wonderful gifts-- love, laughter and acceptance. Wonder and innocence and warmth.  

Sharon 

Thank you so much to all the people who posted messages here for me. Nice or mean I have taken the time to read everybodys opinion and take all said into consideration. I apologize that I said the kids were brats. They just act that way sometimes, I DO Love them and Ill do my best to handle the situation. I should not have been so negative in my postings...I guess I was just blown away by all the meanies who hadnt even seen the show yet. Thanks so much to the nice, positive, people who left such great messages. It IS appreciated. "you get more flies with sugar then with vinigar" (not that anyone wants flies! but you get my point! :)Thanks again to everyone. 

Sincerely, Nichelle 

Jaclyn, 

You are so misinformed. You need to do your research before you give professional advice.   Your alley sounds like it might be the back alley. 

My son Jeremy had Prader Willi. He passed away just after his 17th birthday.  He was a medically very well managed child with PWS. We did this by limiting his food intake, 1100 calories a day, as well as treating him with Growth Hormone, as prescribed by his doctor.  He was 5ft 6in and 135 when he died.  If we had not properly managed his eating and behavior I am sure he would have been well over two hundred pounds and had many more medical problems than just PWS.  He died when his stomach ruptured after sneaking food and the complications that followed.    

There any many good doctors that specialize in Prader Willi, Dr. Dan Driscoll at the Univeristy of Florida Shands Hospital is probally the foremost Genetic expert in the US.   

I suggest that people go to the National Prader WIlli Syndrome web site www.pwsusa.org  to get the facts rather than rely on the postings of some on this message board that my or may not be as qualified as they suggest. 

Pete