Son cant see in right eye....nystagmus..anyone has experienc

FranticFrummie

Tue, Jul 14 2020, 8:36 pm

My DD developed strabismus in one eye when she was 3. We did all of the exercises, patching, etc. We took her to the top specialist in our state, who told us that she's just borderline not bad enough to need surgery.

With glasses her affected eye comes back to center, so it's not a cosmetic problem. She is legally blind in that eye, but can see just fine with the other. She's totally adapted, is driving a car, etc.

The only problem she had growing up, was if she was at a sleepover and she took off her glasses. When she's overtired or not feeling well, her eye turns WAY in, and it's very obvious. Her friends were nice enough not to tease her, but she was pretty self conscious of it.

As far as balance issues, we had to do a lot of work on that. I'd have her practice walking along the side walk curbs, first holding my hand, and then on her own when she felt steady. She didn't learn how to ride a bicycle until she was almost 8 years old. I cried so much when she showed me! I didn't think she'd every have the balance, coordination, or confidence to do it (but I never told her that.)

snowflake1

Tue, Jul 14 2020, 8:45 pm

sorry that was a typo it was supposed to say “traditional route “[
quote="amother [ OP ]"]I'm not sure what you mean by traditional word.

So, just to clarify, I already went to an opthamologist 1 in 2017 to do surgery on both eyes to fix his eyes as they were not aligned and were going in/out.

After that, opthamologist 1 told me everything was fine.

I still thought his right eye was going out but dr said no, its fine.

Then, 2018, I went to a different opthamologist 2(a top dr in great neck).

He also dismissed my concerns and said his right eye is fine.

So, I dismissed my own concerns because the drs dismissed it and made me doubt myself.

And, he was only 3 so it was hard to know what he is seeing etc..

Today, the optometrist ALSO DISMISSED MY CONCERNS, but she ONLY CHECKED INTO IT when my ds said "I cant see" when she asked him what picture he sees(with his left eye covered).

So, yes, she told me to go to a neuro opthamologist, but it seems he is a regular opthamologist who is probably knowledgable in neurological eye issues,

But, there isn't much that can be done. I dont think it's worth risking another operation. There are too many risks.

So,

Yes, I would like it if you can give me a number for services

And if you could tell me what number to call for shuki germans organization.

(And, of course, I will go to another opthamologist meanwhile.)

Thank you so much.[/quote]

snowflake1

Tue, Jul 14 2020, 8:50 pm

Shuki Berman: ‭(718) 437-7474‬

You as the mother obviously had a sense that something was wrong. You cannot always trust doctors they are just human beings they make mistakes. Some of the top ones particularly feel that they are above all and always right. Sometimes it takes a few doctors to find one that will listen to you and take your concern seriously even if he doesn’t see what you were talking about right away.

Kiwi13

Tue, Jul 14 2020, 8:53 pm

amother [ OP ] wrote:

Thanks so much for sharing.

Can I ask you a question?

I see you wrote that "during the eye exams, you were told to keep both eyes open"
My question is "if you close each eye, are you able to see from the other eye ONLY?"

I'm asking this because today, at ds eye exam, the dr covered his left eye, and he said
He cant see any pictures.....(although he was able to see her hand very close up and he did track with the right eye only....) so, it seems he cant see much with his right eye(when left eye is closed)

But, when ds had both eyes open, he was able to see. And, when he had only his left eye open, he
Was able to see.

Thank you.

Ask him what he means by "can't see." I was able to physically "see" in a technical sense, but couldn't make out the images/letters due to the eye shaking.

It's possible that he has the issue more in one eye than the other. My left eye is stronger across the board. I don't remember the details from when I was a kid that clearly, but I'm pretty sure the shaking was worse for me when my left eye was covered (since my right eye was weaker to begin with, first of all, and because I used it less it got slightly more weak).

Kiwi13

Tue, Jul 14 2020, 8:55 pm

When I mean I couldn't see clearly when the eye shook, think of how pictures look when a camera moves when the shot is taken. It's kind of like that, just instead of a still frame it's moving. The eye moves too quickly to refocus, so it all looks like a shaking blur.

amother

Tue, Jul 14 2020, 9:32 pm

Kiwi13 wrote:

Yes, the dr and I suspect that my son probably has something like you explained here.
But, I couldnt get him to explain what he can or cant see because he is very young and just kept insisting he cant see. He just wanted his other eye uncovered.

Thank you for explaining above. It is very helpful.

amother

Tue, Jul 14 2020, 9:34 pm

FranticFrummie wrote:

Thank you for sharing.

amother

Tue, Jul 14 2020, 9:35 pm

snowflake1 wrote:

Yes, you have a very good point.

Thank you for the number.

Tzippy323

Wed, Jul 15 2020, 7:26 am

First, I am sorry that your son is experiencing these problems, and second, that you are being a strong advocate on his behalf.

I know Avila Willig. She is a wonderful occupational therapist who works with children with visual issues, but does not do clinical vision therapy.

You need to see a good behavioral optometrist. Jeffery cooper is wonderful and he is in Brooklyn. While Ezra medical center is very good, I have sent many children there with good results, I think you need to see someone with increased experience because at Ezra you will work with a student ( who is supervised by a full behavioral optometrist).

Your best option might be going to SUNY school of optometrist in Manhattan.
https://www.sunyopt.edu/

They have the most far reaching methods and supervision of students. The one thing you must remember is that there will be daily “ homework” which are a series of exercises to retrain the muscles of the eye. I always tell parents that vision therapy is like occupational therapy for the eyes. It doesn’t work if you don’t put in the effort.

They will also tell you yo have him checked after he hasn’t gone in for visits in six months. This is very important as the gains made do not always hold, and at times, new sessions of in office therapy need to be started. Do NOT take this lightly.

Your son is still young enough that his eyes can be trained. Put in the effort now. He will thank you later.

Hatzlocha.

amother

Wed, Jul 15 2020, 11:26 pm

Tzippy323 wrote:

Thank you for taking time to write this.

amother

Plum

Wed, Jul 15 2020, 11:39 pm

amother [ OP ] wrote:

Thank you.

I used Aviva Willig many years ago, and she was great! She is professional, focused, calm and meticulous. I was very impressed.

My son has a lazy eye and she taught him how to use both eyes together. Also increased his peripheral vision.

Back in the day, she took my RSA from the Dept of Ed