Quote From: joyceoppHello:
It does sound like your friend's child may have PWS. Unfortunately, many, many doctors have never heard of it and it goes undiagnosed constantly. It is a shame because there are some treatments now that have proven effective to help with body composition, energy, growth and metabolism that is life-altering for the better!!!
Please have your friend watch the Dr. Phil show. Also, if he wants, he can take her to a geneticist and ask for a methylation test that will identify all three types of PWS. She CAN live longer and healthier, although it is still a heartbreaking disorder, it doesn't HAVE to be deadly.
Thanks for writing.
Sincerely,
Joyce
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.
