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I know my daughter has a genetic disorder? No diagnosis after 14 years. Does this sound familier to anyone? |
My daughter is the most kind and beautiful child I know, I love her the way she is but I worry about her future with out a name for what makes her special. She has moderate mental retardation, she is smart enough to know she is different. It breaks my heart to see her hold herself away from other kids because she is scared they will reject her. Her skin is extremly dry and it cracks due to pseriosis and exzuma. Since she has hit puberty her bones have weakend. She feel in our house(on carpet from standing)and broke her jaw in two places. She has bone spurs on her elbows and knees. She is showing hemihypertrophy now in her hands, feet, and breasts. She has abnormal facial features acording to her pediatrition. She looks like anyone else to me. Asthma is geting to be scary also. Genetic testing was performed 4 years ago with no diagnosis, going to be tested again next month. I know I cant change her I love her the way she is, want to know what to expect in the future. hunny i am sorry i wish i could answer your question i can relate in some ways because of my adopted neice she has alot of issues to but they do have answers for her and me i am epileptic and all that happy horse she, 3 brain surgeries later im a world closer to the world i long for in the end i live in florida not sure where you are but may io sugguest you try to get her medicare/medicaid disability its goign to be a strugge but well worth it and she will get it even if you ahve to appeal it a few times and when she does finally get approved she will get a retroactive cvheck from the first date of applied!!!!!! That is sad. If your hospital isn't helping, get referred to a specialist! They can get answers for you. I wish I had the answer for you, don't stop searching. My heart goes out to you. Noone should have to see their child suffer. Ignore R-Diz, it is trying to scare you. I have no idea what that hemihypertrophy is but it might be the name of the problem. Hopefully, the new tests will give you an answer. The doctors will be able to help with what is in the future. Good luck and keep the faith. I am sorry but I know what you are going though. My son has a undiagnosed syndrome and Chromosome disorder. They cant tell us what chromosome is extra or what syndrome he has. Are you able to take her to St. Judes Hospital? They will find the answer. They will see her even if you can't pay. It's a great place. She is lucky to have a mom like you. Best of luck to you both. AIDS |
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| EMF Emergency Preparedness Emergency Medical Services Electromagnetic Fields Electrolytes Elder Abuse Elbow Disorders Elbow Injuries Ehrlichiosis Ehlers-Danlos Syndrome Edema Eczema Ecstasy |
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