My 9 year old daughter has what med. professionals are telling me is an unspecific eating disorder. Ever since she was 6 months old she has been obsessed with food. She sneaks it, steals it, anything she can to get it. If unmonitored she will eat until she vomits everyday. When she was 4, a psychiatrist she was seeing for her symptoms mentioned a disorder called Prader-Willi Syndrome. It is very rare and most people and health care professionals have never heard of it. After doing some research on the disorder (and determining that she displayed a majority of the characteristics of the disease) my husband and I decided to do the genetic testing necessary to diagnose it. We were shocked when she tested negative b/c we were sure that we had finally gotten to the bottom of her condition. Ever since than (5 long years ago) we have been just trying to control it as best we can. All portions have to be controlled or she will gain wait and vomit. But it has gotten so bad recently that her school suspected abuse and reported us to Child Protective Services b/c she was stealing milk and eating out of the garbage at school, which she will also do at home if not supervised. We are at a complete loss as to what to do anymore. We are back at square one now w/ a new pediatrician who is again calling it a general eating disorder of some sort and referring her to another psychiatrist. If there is anyone out there who has any advice or information for us PLEASE write back!! Also, if anyone knows anything about Prader-Willi syndrome like if there are varying degrees of the illness or instances where it has been misdiagnosed and she might actually have the disorder please let us know.Reply Follow This Thread Stop Following This Thread Flag this Discussion
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