Nystagmus Support Group

I was born with Nystagmus myself, but mines do to Rubella my mom had while pregnant with me, but I also have micro cornea and Optic Nerve issues.

Anyway, we don't notice the Nystagmus at all on our end.

Since I have other eye issues though, his may be different then mine, but I have severe Nystagmus, and I see everything normal I guess. things don't look like their moving or anything like that.

I do notice I can only see out of 1 eye at a time, but I think thats unrelated to Nystagmus. I think thats due to a blind spot in my vision the doctor has always thought, but thats all I notice. esp now that one eye is almost completely blind, the other eye seems to overpower the other, and to use the other eye I have to like, switch to it somehow. don't know how I do it, just always have I guess.

they tried teaching me how to use both eyes at once when I was little, but I never got the hang of it, and still can't do it.

thank u so much 4 your reply.happy to hear from u.have a great day

you too :) I wish I could explain it better, but since I've always been this way, I have nothing to compare it to. everything looks normal LOL

the vision therapy may or may not help him. I went thru it too around that age, but it never did much for me. I think the brain just learns to interpret what its seeing differently is all, he himself will probably not notice anything different then what you see basically.

It may, depending upon how much the vision therapy helps, and what his visual acuity is, take him longer to perform tasks then other people. This is normal for anyone who is visually impaired. takes us longer to learn new things, but once we get do it a couple of times, we adapt and do just fine by ourselves.

main thing, always encourage your son to do things on his own.. I know its easy for a mom to want to do things for him, and all that, but trust me when I say, you'll be benefiting your son by letting him do things by himself :) he may get frustrated, as I do alot of times myself, but my mom did the best thing in the world for me by teaching me independence.

letting me walk to places by myself, so on and so forth :)

My son was recently diagnosed, he is 12 weeks and now we are busy doing all the steps to find the "cause" we are awaiting an MRI and I can't help but be sick with worry. It was helpful to read others are going thru this. I am doing lots of research and would be happy to share with you. I ordered a couple of books yesterday, when I read them I will let you know if they are worth reading.

I have nystagmus. Your son sees things probably as a strobe light were hitting on the object he is looking at. That is the best way I can describe my lifelong nystagmus experience. Things don't move. When I was young I realized that where I thought something was, was not really where it was -- as in throwing or catching a ball. But you can teach yourself to to throw and catch and even play tennis. Work with your child on his coordination, every day!! There are different levels of nystagmus and there used to be nystagmographs in most major Univerrsity Hospitals. For some really stupid reason, there are no more of these machines. They measured how far the eyes went back and forth and the speed. Back to coordination activities -- this also improved overall brain function.

hi.. my husband and i recently had our third child in nov. of 07... and he was diagnosed with idiopathic infantile nystagmus just last week and that's what i wonder.. what does he see?.. i've just started doing research myself.. but my mother told me to stop because sometimes it just worries me more... although our child doesn't have ds... i can relate to what you are going through.. i would love to keep in touch ..i think we could be of great support together.... good luck!

This is all a form of nerve damage, I think that this site will help you with resources and links but how others have dealt with nerve damage.

Thought we could help.. http://dailystrength.org/groups/ne...

This is all a form of nerve damage, I think that this site will help you with resources and links but how others have dealt with nerve damage.

Thought we could help.. http://dailystrength.org/groups/ne...