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Nystagmus



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shatzileh




 
 
    
 

Post Thu, Jan 14 2010, 1:47 pm
Anyone have children with nystagmus? My son was diagnosed at about 2 months and is now about a year and a half. I'd love to hear from anyone with experience, and just be able to shmooze, exchange stories, progress, discuss treatments, etc.

For those of you who don't know, nystagmus is, to simplify in an extraordinary way, involuntary motions of the eye.
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sleepless mom




 
 
    
 

Post Fri, May 31 2013, 1:44 am
hi, I see this is an old post. but I know nystagmus doesn't go away on its own. how's for son doing these days. I have nystagmusto and I was born with it. just curious anything you dos to make it better. any therapy?
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shatzileh




 
 
    
 

Post Fri, May 31 2013, 7:48 am
Hi! We did therapy from a few months old to about a year, and saw him start to track things with his eyes. Baruch Hashem his eyesight seems to be fine, at least for whatever he needs to be doing at this age. If we look closely and stop to pay attention, the shaking is still there, but it's hard to tell with the amount of activity and running around a 5-year-old boy is busy with. It's most evident when he's sitting still, and when he's concentrating during a conversation, it's minimal. When he's thinking about something or 'spacing out' we can really see it, sometimes accompanied by slight head shaking. We haven't done any therapy for a while.
I've been taking him to an eye doctor yearly, who's monitoring his progress. Most people don't notice, but every so often someone (another child, a teacher) does comment.
Thanks for responding, but I feel like I should be asking /you/ the questions! Any tips/recommendations?
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sleepless mom




 
 
    
 

Post Fri, May 31 2013, 9:53 am
its good that you noticed it right away and was able to have therapy when he's young. my parents only noticed it when I was 8 years old. we went ruining around for the cause of it because if you're born with its nothing wrong health wise. my eye vision is fine too. but in the beginning when we first notice it the eye doctor gave me glasses and my number was 4.25. then I started vision therapy by suny downstate optometry, in Manhattan located at 33 west 42 st. twice a week. once for focusing and once for bio feedback, under dr. tannen's care. biofeedback helped amazingly and people asked me if I did surgery. And my glasses went down in two years from a 4.25 to a .75. I don't were glass at all and my vision is fine. by now it's only a cosmetic problem Smile.
p.s. after biofeedback it was almost unnoticeable only when I was tired until I became pregnancy with my first pre plus I don't get too much sleep. but I know that if I want to improve it, I only have to go back for biofeedback 5 times to remind my mind how to control my eye movement. yaya Im planning to go back after my child bearing years.

any questions or concerns ask me I'll be happy to help.
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