Babies: 6 - 9 Months
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Anyone's child have nystagmus?
A friend's child has nystagmus, where the eyes move very quickly from side to side and they do this continuously. I am looking for resources, specialists, etc. She has already taken him to on specialist and wants to continue to get as much information about this condition as she can. Thanks for any and all information.
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Re: Anyone's child have nystagmus?
No, but I read a blog and her son does (he's about a year now). She's documented a lot of what they've been through, and honestly I'm sure your friend could email her. Link below.
https://dearbabyblog.com/
Our son has congenital nystagmus. He turned 6 months old last week. His pedi noticed it at 2 months old. We were sent to an ophthalmologist to check his vision. We knew he could see because he was tracking objects, reach for them, etc. The opth wanted to see him back at 5 months because it usually calms down some or goes away by then. His had improved a lot but was still noticeable. He then said it was congenital but wanted us to get a second opinion. We were sent to see a Riley Hospital Pediatric Ophthalmologist in Indy. She said definitely congenital nystagmus, his vision was the same as any other 6 month old, but also got the diagnosis of albinism. Albinism can cause nystagmus, among several other things. If you saw my son, he doesn't look albino. Most children with albinism fall behind developmentally and are late to reach milestones. Our son has been reaching his milestones, been sitting up unsupported for about 3-4 weeks now, and working on crawling. Also, a lot of babies diagnosed with it have severe vision problems. We again, are very lucky his vision is great right now but the opth did see some nearsightedness and astigmatism, which I also have. He will need glasses between elementary-middle school. I even knew that before he was born that he most likely would since vision problems run very high in my family. We now got a referral for a geneticist to see what type of albinism he has, the opth thinks it is just ocular albinism, and to see how he got it and what the chances are of our second child having it, or if our son just got a mutation in his DNA. For right now, we are thankful he is reaching his milestones and can see like a normal baby can at this age. The only thing is with the albinism, he is very sensitive to the sun, so he needs sunglasses when he goes outside. But once he reaches toddler age and wants to be outside, they expect him to learn how to manage it so he can do the things he wants. What toddler wants to sit inside all day when it's nice out?!
I know once they reach a null-point with nystagmus, meaning they learn how to hold their head and adjust it to get a good focus on things, they can do eye surgery. Since he hasn't reached that point yet, we didn't go into detail about surgery. Nystagmus can be congenital or for some other reason, the opth will be able to determine that with some tests, dilating the eyes, checking eye structure. Also, it doesn't hurt to get a second opinion. If we didn't get the second opinion, we would have never known about his albinism. I hope this helped some.