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Heterotopia

Posted by on Sep. 28, 2010 at 4:46 PM
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 My daughter is 6 and her name is Carrie. She has had motor delays almost from the time she was born. She was a late walker and walked at almost 2 with the help of EI. She has always fallen a lot, has trouble with stairs, can't button buttons, etc. Since she was little she has also had some kind of episodes when I wake her up. It only happens if I wake her up. She trembles all over and it almost looks like a low blood sugar kind of shake. She has trouble standing for a few minutes right after also. Her regular pediatrician has never given me an answer about it. Her neurologist thought she might have a mild CP and recommended an MRI. In the mean time, we saw a pediatric eye specialist because of a head tilt. Turns out she has Strabismus and had to have surgery to correct it. We did the surgery and the MRI at the same time this past Friday. I got a call today from the eye surgeon saying that the MRI showed an "abnormality" that was outside his area of expertise. We are waiting on a call from the neurologist to explain, but he mentioned Heterotopia. From what I gather it's where nerves in the brain form in the wrong place. 88% of females with this have seizures, majority of them start between ages 6-13. Strabismus, dyslexia, psychological disorders, and motor delays are also common. Has anyone here ever dealt with this?

by on Sep. 28, 2010 at 4:46 PM
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tlcesd
by Member on Oct. 9, 2010 at 4:49 AM

Wow, this sounds very scary. Thank you for sharing your story. Unfortunately I don't know anything about Heterotopia, but if you check out John's Hopkins or Seattle Children's, they may have some resources for you.

Good luck to you and your family. God Bless-Sirena

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