Messages By: drgnj66

I have a friend with a child with PWS, or so they say.  She is 13 and weighs about 300 pounds.  She really doesn't act obsessed with food, until it comes to meal times....her Mom has custody of her and appears to feed her whatever she wants.  She is diabetic, and appears to be very un healthy.  My friend, her DAd, is afraid of his ex wife, so he does nothing to help the child either, but is getting concerned, as his daughter can barely fit in the car! She is almost too big for the seat belt.  As a friend I'm not sure what to do, because in my opinion her Mom is abusing her by not taking care of her, but how can one prove it? When she is with her Dad, she eats what he tells her to eat, which are healthy usually non fat foods, or foods with no sugar...so her obsession's seem to be more of her Mom's, if that makes sense.  There has got to be more people with this disorder, don't doctors know about it?  and where do these kids go once they're adults?  This girl is badly retarded, yet no one will do anything for her.  They keep pretending she will one day be okay. They even let her trick or treat, which I thought was horribly abusive to her.  But am I too concerned? at the rate she is going, she'll probably die before she's 20...is this common? Is it a hopeless disease?  I am thinking of ending the friendship, because I cant take watching her grow up like this.  Is there anything I can do?  Thank you

  

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.   

Joyce, could you post the info regarding Mercy Hospital?  I checked their web site and didn't see any links or anything relative to this program.  I'd like to give him more information on it if possible, but if it is expensive I'm not sure he'll do anything, he doesn't make much money and the girl already has HUGE medical expenses.  But it sure would be nice to see her thrive more if it's possible.  Your absolutely right, she isn't getting any treatment right now, except when it suits her mother's needs and ego.  And then it's only a variety of antibiotics, and many doses of insulin.  

  

When I originally did some research, that is what I thought that some PWS people can move forward in life.  I don't believe his daughter will because her retardation is significant at this point, she's at about a level of a 9 year old, if that.  Only success she would get is to be away from the mother, as I said she doesn't seem to want to help her child.  Thank you and god bless you and your family. 

That is what I thought, but no one does anything.  The MANY< MANY doctors you would think would do something, but they haven't.  And her father cannot afford to do anything right now, though I know he cares for his child, I think it is overwhelming for him to even comprehend where to begin.