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Toddler's w/ atraxia and eyes roll back - may have found diagnoses myself

Posted by on Sep. 30, 2009 at 11:24 AM
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Despite the many tests that my 21 month old has endured and all the doctors and therapists we've dealt with, I think I may have finally figured out what is wrong w/ her.  My daughter is very developmentally delayed w/ hypotonia.  didn't pick her head up til 6 months, started rolling at 10 months, sitting at 16 months and finally started army crawling a month ago.  Since around 1 year old, she would sometimes look up for a few seconds and it almost seemed like she was dizzy.  She is very atraxic (lack of coordination and mucsle movement), she isn't walking, her truck is so unbalanced and wobbly.  All neurology tests came back normal.  The eye rolling really started to bother me, I thought, "maybe there is something wrong w/ her equilibrium".  After looking up "toddler eyes roll back" I found a diagnoses called Paroxysmal Tonic Upgaze (PTU).  If anyone else is experiencing these upgaze episodes w/ developmental delay w/ hypotonia and atraxia, please go to this website: www.upgaze.com.  It is a rare disorder that most doctors and specialists don't even know about.  I have felt so lost for so long, I finally feel like I may have some answers.  I hope this helps anyone going through the same thing.

by on Sep. 30, 2009 at 11:24 AM
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diane08502
by on Oct. 1, 2009 at 10:57 AM

There is also Ataxic Cerebral Palsy, my son has it.

    abnormal eye movements can also be found with seizures, please do an EEG as soon as you can!!!   Talk to the neuro about it!! 

     Ataxia, is without coordination. 

              sending you prayers that your little one will get stronger everyday!!!  Love, Diane

dianelanglamorticella@yahoo.com
mamamelof3
by on Nov. 12, 2012 at 9:28 PM

I will be taking my 22 month old to get an MRI completed tomorrow due to his eyes rolling back and I live in a relatively smal town so your information will definately help us with this appointment! Thanks for sharing!! God bless your beautiful child!

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