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Infant cataracts and nystagmus

Hi there,

My little 9 month old nephew was born with cataracts and his eyes have pretty severe nystagmus (jumping, rolling).  He's been tested for diabetes, adrenal issues, brain and eye tumors.  All are negative and nobody seems to know how to help him.  He is going for an ultrasound to check for an adrenal tumor very soon too.

Has anyone heard of this before in a child so young?  His pediatric eye dr. just gave him a prescription for glasses.  My sister (his mother) is beyond frustrated and worries that it's getting worse and he'll eventually be blind.  

Any insight would be so helpful!  Thanks so much!!
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Avatar universal
my nephews 15 month has something wrong with his eyes  we are so worried but the mother and father are young and don't seem to admit there is something terribly wrong with him  the baby"s eye always look upwards  he doesnt seem to focus he stands up but will not walk or crawl  he hits his head or slaps his belly when we tell who's a nice baby  they have been to one specialist and are waiting for a neurologist for test but should they  be trying to get other opinions  one doctor said he is not blind we ae worried that he is   HELP Grandma any similar forums or suggestions greatly needed
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Avatar universal
I agree that he should be more thourghly examined.  The glasses will help keep this eye muscles strong and should help keep his eyes from turning in.  I agree that the cataracts should be removed.  Cafemom is a helpful website, there are quite a few families there who have children with a similar problem and they might be more helpful.    
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Avatar universal
He definitely needs to be reevaluated by a pediatric ophthalmologists. The nystagmus is more than likely related to the decreased vision caused by the cataracts. He needs to have the cataracts removed.
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