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Posts: 8
Joined: Jul 23, 2011

rare chromosome inbalance HELP

Posted by @domaha62, Jul 23, 2011

Hello I’m new out here and desperate for help for my daughter. My daughter is 11 and has a unique chromosome inbalance of 19p duplication. I live in Mass. and go to Boston Childrens Hospital for all our medical needs. According to BCH registry of chromosome inbalances, my daughter is the only one with a chromosome 19 inbalance. So therefore there is NO ONE to compare her to, My daughter (I’ll call her angel) is a very medically involved girl. Most recently my daughter has had symptoms of bluish color to her feet, hands and around her mouth. Had vomitting with diahrea and very low energy and weight loss. this has been going on since May 3rd. The vommitting has stopped but every thing else still continues. She has been admitted to our local hospital twice and into BCH as well with NO answers. They have run every test they could think of. Now all the Doctors have decided to let thinks run its course. Most recently The decision has been to see her metabolic Dr. This is a quick overview of recent symptoms can anyone help or have any direction?;


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