My daughter is now 15 years old. When she was born, she [...]

Posted by fladrew @fladrew, Jan 27, 2015

My daughter is now 15 years old. When she was born, she was a perfectly happy, beautiful baby, she started walking around 12 months of age, she started saying word around the same time, learned to swim by the time se was 18 months old, could run, play, enjoyed music etc.When she was 2 1/2 years old we noticed that she had trouble hearing. Her haring loss went to mild to profound within 1 year. She got a cochlear implant at age 4. While the cochlear implant worked, she started losing her fine motoric skills and at the same time it seemed as she was also losing her intellect. As time went by, she stared falling when walking, to the point that she was no longer able to stand on her own. For the past 5 years we have to hold her when she walks or she will immediately lose her balance and fall. became cross eyed about 2 years ago overnight. She no longer draws or colors, the simplest of puzzles that she was able to assemble when she was 2 are now too hard for her, she has not said any regular word since she was 3. All the doctors we have taken her to don’t know what is wrong with her. She has ataxia (which started around 5+ years ago), doctors seem to think she may have some sort of cerebral palsy, but they are not sure. We had neurologists looking at her, MRIs done (prior to the cochlear implant), CAT scans, and nobody can figure out what is wrong with her. She is normally developed, in any regards she is a perfectly normal young girl, but intellectually she is regressing. People who now her from when she was 2-3 years old, running around and playing, and are seeing her now cannot believe that is the same individual. She never had any trauma, was never badly sick, never got hurt, so we have no idea what could have caused her condition.I cannot believe that she is the only person in the world that has this condition, but so far nobody we went and spoke to has been able to identify her problem, even less treat it, if treatment is possible at all. If anyone has any suggestion where we could turn to or has heard of a similar case, please let me know.

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