Congenital Nystagmus?

[kellyds]

Does anyone's child have this? We have an appointment for a pediatric ophthalmologist to see Joshua while he's in the hospital recovering from heart surgery. I've pre-diagnosed him with nystagmus.

Really, I'd be surprised if that's not what the doctor says. We made the appointment because it's obvious that he doesn't see well unless I'm RIGHT in his face and because he almost always looks to the left. I'm just wondering if there's anyone here whose child has been diagnosed with this.

[momofrussell]

Russell has Nystagmus pretty good. Russell had congenital bilateral cataracts and since the lenses were removed shortly after birth but no implants were put in, his brain and eyes didn't "connect" properly. As a result Russell also developed Nystagmus and Amblyopia .. which in return caused the Strabismis. LOL... He also has a wandering left eye due to an elongated and pulled up pupil after his cataract surgery. He couldn't see out of it well so he didn't use it much either. Still doesn't. We have had surgeries in the past for the Strabismis once or twice, can't remember now and surgery to reconstruct his left pupil and will probably have to have surgery again ... for the wandering left eye this time.

So.. I can't say Russell's Nystagmus was congenital but he does have a pretty good case of Nystagmus going on.

Does Joshua's eye's jiggle? I am assuming when you say he almost always looks to the left you mean he is doing this because he is finding his null point to see? Russell turns his head one way to find his null point but sometimes his left eye will then wander outward and up so he had to then turn his head the other way to stop the left eye from wandering.

Hoped this helped. Sorry I was so wordy but I couldn't just say Russell had Nystagmus LOL!

Let me know if you are correct in your DX!

A.

[MatureMomG]

Yes, Rosemary ahs it. She was diagnosed at about 9 months and got glasses at 13 months (and does fine with them). The glasses are not for the nystgamus.
I think she sees quite well. Rather unusually, hers got much better. She still has it, but not as bad. Also, when it got better, she compensated by starting to shake her head back and forth (like saying "no"). She was used to things boucing around, adn when it got better, she "made" them bounce around by shaking her head. This is getting much better, she used to shake almost continuously, now it is only sometimes. People did wonder what was wrong with her with the head shaking.
There is lots to learn about nystagmus. Lots of web sites, etc. When she was diagnose, I went to see a very good old friend who has it (quite severly) and asked him about it. He kind of laughed it off- he won sharpshooter medals in the army despite his eyes moving like crazy. I do think it affects differently.
I KNOW Rosemary sees pretty well. She can push a tiny button on a toy to make the music go.
We happened to luck out with a really good female optometrist. When we were trying to get her to be still, I suggested that I just nurse her, and she would be quite still. Which of course she was, and though it wasn't very discrete, the doc got all the info she needed and was perfectly comfortable with the nursing. I would have done the same witha guy, buut both he and I would have felt mor uncomfortable. Also, this lady has her own special needs child, so she comes from background of personal experience.

Bets of luck to you.
Kathy

[Debbie]

I have stribismus and nystagmus. I wear glasses too. My glasses don't really correct my vision though. My left eye tends to move toward the corner and stay there. My eyes also move. I am so near sighted that I have to move closer to read things such as signs, book titles and anything that is small printed. My eyes have always been this way since I was born.

I have Mosaic Down syndrome. I am forty four. Most of you know me, some of you may be new here. I used to be Debbie and I still am but I had to re-register as another name to get back on here. I used my middle name. I am starting over again. ;D

[donnita]

I learned that nystagmus is when the eye shakes back and forth, but I was learning about Field Sobriety Tests, not conditions of the human eye.

Good luck! Let us know what the doctor says.

Donnita

[momofrussell]

So, what you are saying Donnita is that you learned when you pull over someone and their eyes are shaking, that doesn't mean they are necessarily drunk?

LMAO!

a.

[donnita]

A - it is one of several tests that a police officer can use to determine if someone is driving under the influence. It is called "Horizontal Gaze Nystagmus" and only occurs as a person under the influence tracks an object along a horizontal path. There is no nystagmus when the person is simply looking straight ahead. So, if the person shows HGN, then they are very likely to beintoxicated. It is not ever used as the only indicator.

I'll show you in Louisville, but we'll have to drink a lot! LOL


Donnita

[wrblack]

If you're talking about eyes turning, instead of jumping, bouncing, darting, then maybe you want to change your diagnosis from nystagmus to strabismus. And you might want to review the "eyes" thread on the Health & Medical Issues forum.
But either way, turning or darting, yes, kids with Ds tend to have more than their fair share of this.
My son Charlie has had a little of both, along with his bilateral congenital cataracts. At one point I think his pediatric ophthalmologist thought we were going to need the muscle surgery for strabismus. But I think he changed his mind. Charlie's strabismus improved, and so did his nystagmus. The bouncing, jumping, darting of his aphakic (without natural lens) left eye has dampened considerably over the years. His null point seems to be over the bridge of his nose.
I think there are less treatment options for nystagmus than there are for strabismus. I believe adults with nystagmus can try medications to try to dampen the nystagmus. And I think there is a relatively new surgical procedure, tenotomy, similar to the muscle surgery for strabismus, that is in clinical trials which hopes to dampen nystagmus. I think the nystagmus would have to be pretty darn visually significant before I'd get too interested in the new procedure. -- Bob