Am I the only mom out there with a child with Prader-Willi syndrome? If you have a child with this syndreom, can you please write me back? Thanks

Edan - posted on 06/25/2009 ( 6 moms have responded )

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My child has Prader-Willi syndrome-the syndrome that got alot of press a couple of years ago on Oprah where the children can eat themselves to death and look like sponge bob sqare pants. It's no fun because they usually have co-morbidites (associated diagnosis) like generalized anxiety, OCD, and things like skin picking and will repeat things over and over. Each child is different, but it is rare and very hard to deal with. Nobody else in my town has a child with this syndrowm and I feel like I'm all by myself. I've tries very hard and the doctors say I've done a good job because she looks good (5'0", 160#), but a what cost to myself? My stress level is extreme to say the least. Any ideas?

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Jeannie - posted on 06/06/2011

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Our daughter has Prader Willi Syndrome and is 19! We have gone through all of the above. I will be happy to answer any questions that you may have.

Jill - posted on 07/31/2010

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Hi - my baby, Zach, has PWS. I know this post is old and not sure if you have already found others to connect with. If you want to chat please let me know.

Tammy - posted on 08/02/2009

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I did not have a child with Prader-willi but my husbands ex-wife does, and we are all friends. I have a disabled child as well.Heather is 21 and she weights over 300 lbs and only is about 5 foot 3.She has so many health problems too.She takes over 4 shots a day for her diabeties,she has a heart problem too.Heather is a happy child though, goes to church,she can read and write alittle.I think the worse it ever got for them was when they had to lock the cabinets and fridge,just to keep her from eating herself to death.This was when she was like 15 or 16 going thru puberity.I know her mom has had a rough time with Heather but she says all the time she doesn't know how she would have ever lived without her!!!! I hope this helped in some way.Knowing you are not alone.And there are people out there who understand!!!! MY daughter has seizures and is mentally retarded. So I also understand about being stressed out!!! BIG HUGS !!!

Teri - posted on 08/01/2009

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my child is in the process of be tested for prader willi, she is on the autism spectrum, odd,adhd,pdd, asperger symptoms..... lots of issues. we adopted her over 2 years ago.

the doctors here call her a mystery. she is 4 years old and weighs 641/2 pounds. we struggle with her diet. every day is such a struggle. her behavior and activity level is the most difficult. i will probably be criticized on here over her weight, but we see drs. regularly, sometimes three times a week.we are waiting impatiently on our next genetic appointment so we can get more results, we do know that she has ring chromosomes and mosaic , but she has signs of prader willi. i will let you know when we get the testing finished. i also feel like i am by myself no one around here has even heard of prader willi. people that dont know my daughter has special needs and some that do just dont get it! especially when i am in public and she acts out. we make it day by day with the good lord looking after us. because there are times when i think i just cant keep on. we also have her younger sister who is 18 mnths. and she is starting to pick up some of her sisters habits. i would not trade my children for anything in the world. i love them the way that they are. there are just days when you would just like to know how to deal with some of the behavior.hang in there sounds like you are doing a swell job!

Hannah - posted on 06/27/2009

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Hi there,

My daughter has all the symptoms of preder -willi syndrome but when tested she came up negative. It is possible that she has aquired prader-willi but there is no way of testing it. I can relate to the issues you face though. The Dr's say my daughter has ADHD 'tendancies', obsessive compulsive 'tendencies', autistic 'tendancies' etc etc but does not fit completely into any of these categories. She has the obsessive eating issues and is very repetitive. I know how hard life can be and how stressfull it is. Know that you are not alone out there. There are Prader-Willi organisations out there, google it and see if you can tap in to a group and meet some other people in your situation. The best thing you can do is talk to other parents. Take care and try to look after yourself too!

Marne - posted on 06/25/2009

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I'm so sorry for your difficulties. My son does not have this disorder but there is one or two Moms on the apraxia-kids site with kids with this disorder. Apraxia and prader willi both have possible co-morbidities that overlap- hypotonia, feeding issues, OCD, sensory integration disorder tend to be the more common disorders also seen in apraxic kids- so I have heard of this problem from there. I hope one of those Moms sees this post and replies. I'm sorry I can't be of more help to you but if you just need a shoulder to cry on or rant at I would be happy to listen :-)

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