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Hello, I am new to this site and was wondering if any other mommy is dealing with the same issues. My son was born 9/15/09 and has had some issues with his eyes rolling up, an upward stare and the positioning of his arms and hands. He has right optic nerve hypoplasia and may or may not see normally out of that eye, but way too early to tell.
We have been to neuro, optho, and ortho (hip click)...we are waiting on genetics tet to come back, 1st 2 hr EEG was normal, 48hrs EEG showed some "spikng" but no seizure activity, MRI was normal. so, the only answer I get is wait, wait, wait and more wait to see how he develops and possibly do another EEG and MRI.
sorry I am no help. My daughters eyes did flutter up and down and left and right. They called it wondering nystagmus. Hers was due to congenital cataracts though. When you say optho, do you mean opthomologist? Or optomotrist?
I wanted to share this information but don't understand why I can't do it unless I post nine more times!
go to the worldwide web, (if you know what I mean...those three w's in a row)
then a dot
then type in upgaze
and then another dot
and then the first three letters of the word organization
I was watching Mystery Diagnosis tonight and saw a show about a baby who looked up all the time the diagnosis was paroxysmal tonic upgaze
You might research this on the web and see if it matches your little one.