Can someone tell me about Nystagmus?

[Thing1Thing2]

Hello - we are concerned that my 4 year old with Aspergers has nystagmus. His occupational therapist saw some issues with his eyes - and mentioned that it is very likely- which explains many things. We have his pediatrician dr appt next week. But suffice it to say - I am worried. I have never heard of this, except that the OT is saying its neurological.

Can anyone with experience chime in and give some info or reassurance that this is treatable?

[heatherdeg]

Well, I'll be watching this thread as we have some vision issues with my Aspie and I've never heard of this.

But I WILL say that a number of neuro issues that my son had that were written off to miswiring that couldn't be fixed WERE in fact fixed (or greatly helped) through diet or supplementation.  For instance, his sleep issues (which were PROFOUND) were "cured" with adult dosing of fish oil (that we gave him in the hopes of general support and never imagined would affect his sleep).  As his diet changed, his absence seizures disappeared.  So really, I no longer take much stock in what they tell me is or isn't possible but I know it could take a while before I see what can or can't affect the situation.  Does that make sense?

[Lollybrat]

There are lots of different types of nystagmus, which are classified by things like how the eyes move (pendular, upbeat, downbeat, jerk, etc) and if it is constant or only occurs under certain conditions (such as head position, response to certain stimuli, etc).

Different forms of nystagmus caused by a lot of different things. Some causes include: neurological issues, vestibular issues, structural problem with the eyes, substance induced (medications or toxins), injury-induced, various other syndromes, etc.

My DS has autism and also has albinism.  Albinism is a pigment disorder that causes structural defects of the eyes and results in vision impairment.  Nystagmus is usually (but not always) a part of albinism. My son is lucky in that his vision impairments are relatively mild.  He has very mild intermittent nystagmus.  Most of the time it isn't there. But if DS is very tired or if the lighting is a certain way, we can see his eyes "dance" (pendular nystagmus).
 

I would suggest you have your son examined by a pediatric ophthalmologist as a first step.

[Thing1Thing2]

Thanks for the info. My DS has it mostly when he closes his eyes. He has such a hard time going to sleep becasue his eyes wont stay still. He has been telling me since he knew how to talk that he "doesn't know how to close his eyes". That comment made so much sense when the OT made the observation that he possibly had Nystagmus.

Lollybrat, would a ped neurologist be useless in this case? He has one that he has seen once. We were thinking of taking him there first.

[Lollybrat]

Lollybrat, would a ped neurologist be useless in this case? He has one that he has seen once. We were thinking of taking him there first.

I think a ped neurologist is a good idea.  But I still think it would be helpful to rule out physical/structural causes first: things like muscle imbalance, retina/macula problems, optic nerve defects, etc.  A ped ophthalmologist can evaluate for these things.  The neuro might want to have this done to make sure all the eye structures are normal before doing any neurological evaluation/testing.

[Thing1Thing2]

Thanks Lollybrat for explaining that. So confusing with all these different types of drs!

[hdirks]

My daughter has had nystagmus since she was born. Hers has become less frequent but you still notice it, particularly when she doesn't feel well or is tired or over stimulated. She does have neurological issues as well as other abnormal eye problems, but ironically her vision is perfect. We have never tried to "treat" hers and she sees multiple specialists and neuros and they have never even mentioned a treatment for it. It is just something that seems to happen with her eyes, and it doesn't seem to bother her. Good luck!

[askew]

My son has nystagmus, has since he was 10 weeks old. His has gotten better with age. We have done surgery twice to fix his null point, something typical with congenital nystagmus. My 3 year old has nystagmus once in a while, only with certain gazes. They are not related I am told, as she has a brain injury and his they found no cause for. Sometimes it is just genetic. 

[Thing1Thing2]

Thanks for the well wishes and info hdirks..

askew - i think in my sons case this is genetic. I was so worried about my DS, but then I noticed last night that when I go to sleep, I always put my arm over both my eyes, pressing down on them. I have known for many years that this is the only way I can fall asleep. I wanted to see what would happen when I tried to take my arm off and my eyes started moving around! It was very uncomfortable to say the least.

Its amazing how much your children teach you about yourself!