Community› The Bump Message Boards› Special Needs
Special Needs
New Discussion

Nystagmus and ocular albinism

TSimpsy07TSimpsy07
in Special Needs
My DD has this rare eye condition. I have yet to see it affect her in any way. However I have noticed that she doesn't seem to notice things that are more than 15 to 20 ft away. I'm wondering if she is also near sighted. The tracking eye movement has also slowed as she's gotten older. Eye specialists aren't able to tell us much in terms of how this will affect her as she grows. Some kids who have it are legally blind while other kids have good vision with it. Are there any parents out there with a child with this condition? If so , how is your child progressing? How's their vision, balance, eye tracking, and hand eye coordination? Thanks
Report Reply to Post

Re: Nystagmus and ocular albinism

  • Florak8Florak8

    How old is your daughter? You may find that she does better in certain light conditions. Does she wear glasses that change to adapt to bright light? That could help.

    This a great website for parents: https://www.familyconnect.org/parentsitehome.as

    .
    Report Reply
  • Loading the player...
  • TSimpsy07TSimpsy07
    She is 29 months old. I have yet to notice it affecting her. Even on bright sunny days she doesn't say anything, just squints..as would anyone. She is not wearing glasses but I offer sunglasses to her if we're out in the sun. We don't know if corrective g
    Report Reply
  • Assembly_ReqdAssembly_Reqd member
    Nate has gaze directed nystagmus which is very subtle now since his brain has matured.

    When you see the specialist, don't be surprised if they want to do an MRI.....if you haven't already...

    You see with your brain and the eyes a
    WAY 2 Cool 4 School


    image
    Report Reply
  • Florak8Florak8

    Sounds like she is doing great developmentally! :) The fact that she can identify and state aloud the letters, numbers, and shapes will be super helpful when measuring her eyesight. There are a lot of aspects of eye-sight which can be measured using di

    .
    Report Reply
  • TSimpsy07TSimpsy07
    You were SO helpful. You honestly explained it better than both specialists we've seen. Neither if them have ever worked with a child with this condition so they barely have any insight to offer me. And with the peds I'm usually explaining to them what th
    Report Reply
  • TSimpsy07TSimpsy07
    I mean to say condition not disorder :/
    Report Reply
  • sissydaltonsissydalton
    My daughter has nystagmus along with many other things. It didnt really affect her until she became school aged. She is 8 now and has trouble reading and writing. Her muscles compensate all day long so give your daughter a break from her eyes working so h
    Report Reply
This discussion has been closed.
Choose Another Board
Search Boards
"
"