Discussions By Condition: I cannot get a diagnosis.

Help for my daughter with overgrowth

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: vickysmom
  • November 4, 2006
  • 00:56 PM

My daughter is about two weeks away from turning five. At 21 months old she received a diagnosis of cerebral palsy. She has had blood work for nearly everything known to man, all normal except for an elevated IGF II gene, which can't be linked to anything. She has had a normal MRI. No seizures ever and we were told that she won't get them. Hip x-ray shows no problem. Now here's what we do know, she has not ever walked unassisted. she has speech problems from poor muscle tone, she is just over 4 feet tall and just over a hundred pounds and there's no sign of slowing on height and weight. She has a high IQ, no hearing problems, she will need glasses in the future, but that's in the family. She has a bone age of 6-7 years old. She had an equestrian stance but was corrected with orthotics. She uses a walker but tires easily as she grows bigger. Her Genetisist and Endocrinolgist believe there's no way she has cerebral palsy and that it's an overgrowth syndrome but have no further testing to do to confirm. Does anyone have any idea's for me, we're getting very frustrated going to doctor after doctor with no hope of a correct diagnosis or treatment plan. My daughter is a very happy girl considering what she goes through each day, we just want to make things easier for her. Any help or idea's would greatly be appreciated.

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