Genetic Disorders Expert Forum
Finding help for my daughter
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Questions in the Genetics Forum are being answered by medical professionals and experts. This forum is for questions and support regarding a person’s predisposition to a variety of medical conditions such as Ashkenazi Jewish Diseases, Bleeding Disorders, Blood Clotting Disorders, Cancer Genetics and Hereditary Cancer Syndromes, Chromosome Abnormalities, Congenital Birth Defects, Cystic Fibrosis, Family History, Fragile X Syndrome, Infertility, Newborn Screening, Rare Genetic Disorders, Prenatal Screening and Testing.

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Finding help for my daughter

I have a step daughter that was diagnosed with static encephalopathy about 11 and a half years ago. She has been through all the tests, at all children and shands hospital. I came into her life about 4 yrs ago and in that 4 years i have noticed more of a decline in her. She is 13 now and is constantly hurting herself. Her body is scared up pretty bad, because of either mosqito bites she has gotten in the past or her current thing is taking clothing tags or wash clothes and rubbing her skin until it is a sore. We have had DCF at our steps so many times in the last year and a half because of the abuse to herself. We try and prevent her from doing this to herself and we cant. She can not speak, potty, bath, dress or change herself. She is still wearing pull ups because she is incontinent. The doctor she has for a pediatrician and that has been there since day one has pretty much washed his hands of her. The remark we get when we ask if there is any more tests or anything more we can do for her is "LIFE JUST TOOK A DUMP ON HER". So i am in the process of finding a new doctor for her. Does anyone know of any doctors in the central floirda area that specializes in this condition? Does anyone have any idea's on what we can do to prevent her from doing this to herself? We are very frustrated because her own mother has pretty much washed her hands of her. She only has contact with her 2 times a month, now her doctor is giving up and me and my husband are the only ones left for her. If anyone knows anything please let me know. Thank you and god bless you all that are dealing with a child with special needs. Your all they have : -)
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We recommend that your step-daughter meet with a clinical geneticist who can perform a physical exam as well as review her personal and family medical history. A clinical geneticist looks for signs and symptoms that may be caused by an underlying genetic syndrome. You can find a medical geneticist in your area at the American College of Medical Genetics website.

We wish you the best in finding the care and support your step-daughter and family needs.
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