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November 1, 2005, 1:25 am PST
My baby has PWS, too
Quote From: drgnj66
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. Hello:
Thanks for writing. I feel very Blessed to have Daniel, he is the sweetest little person in the world and I know that he is meant to be here and I am meant to be his mom.
You should know that there are several people that have been diagnosed with PWS that have graduated from college, not all are like your friend's daughter. In fact, ALL of the kids that I have met to date are nothing like you describe.
My heart goes out to her because she needs intervention, she needs daily shots of Growth Hormone, she needs special care and it sounds like she isn't getting any of it. Please tell your friend that there is a PWS clinic at Mercy Hospital in Pittsburgh, they specialize in cases like hers and they CAN get the weight off and begin treatments to increase her quality of life and lifespan.
I will pray for your friend and his daughter. Thanks again for writing.
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