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

amother

Tue, Jul 14 2020, 1:30 pm

Son had a problem aligning his eyes and his eyes were going out/in...

So he had strabismus surgery when he was around 1 and 1/2 yrs old..

Opthamologist said everything was fine after that...he still has glasses for seeing better ...

Dr said his eyes are fine after the surgery BUT I STILL SAW HIS RIGHT EYE SEEMED NOT TO FOCUS AND IT WENT UP..

So I went to another dr who's top dr and he had his optometrist do the exam...

Nobody saw any problem, when I met with the opthamologist, he

Dismissed my concerns...said everything was fine...

TODAY, I went to get glasses prescription for my son...he is 5 now.

So, the optometrist also dismissed my concerns about his right eye going up...

UNTIL SCARILY, MY SON SAID HE CANT SEE (when she covered his left eye, and asked him what he sees) so he cant see any pictures/details...in his right eye...

But, by he was able to see the mask and hand close up...

So, the dr looked closely and says he has some jerk nystagmus.

Nobody can do anything about the nystagmus. Theres no cure and since his left eye has amblyopia, prisms or...wont help.

The only thing she did say is to see neurological opthamologist??? To see if there are lesions in his brain???
Meanwhile, I'm wondering if anyone has a child or themselves with this issue.

Are there any supports from nys??
I probably will have to get him some magnifier tech for reading print when he is older...

At this point, this is his bleak diagnosis and we dont know if he was born with this
(Or, if he got this from the surgery...anyway
At this point, anyone can help share resources or their experiences...

I live in NY.

Tia.

amother

Mustard

Tue, Jul 14 2020, 1:44 pm

My daughter has neurological amblyopia and in her left eye she is legally blind. We found this out when she was 5 and tried ALL THE THINGS. Nope. Still blind in that eye. She is 16 and is driving. Yes, we see a neurological pediatric ophthalmologist and yes, it was he who gave her the drs. note for the DMV to allow her to get her permit. This is just her life and this is what she knows. And BH she is pretty much fine. The only thing she CANT do is see 3D movies. It just does not work without both eyes. Since this is neurological and not muscular, there are no surgeries we can do to correct it. Otherwise, BH she is ok.

amother

Tue, Jul 14 2020, 2:26 pm

amother [ Mustard ] wrote:

Thank you for replying.

I think my ds has the same problem such that its neurological. At this point, I'll take him to another dr but hes been to so many.

Can you please tell me if you know of any supports that

New york state gives?

I'm assuming I may need to get technology to make papers bigger, did your dd need that?

amother

Tue, Jul 14 2020, 2:28 pm

amother [ OP ] wrote:

amother

Mustard

Tue, Jul 14 2020, 2:56 pm

amother [ OP ] wrote:

I am not in NY. She does not need any services. There is this idea that any special thing in NY needs a special service or support. You can live a normal life with one working eye. I always make sure to tell her teachers that she needs to be in the front row in school, but she ends up sitting wherever she wants to sit. Teachers are accommodating to the request but my daughter tells me it makes no difference.

We did try to go to a vision therapist for a while when she was younger. Vision therapy is debated and specialists are not even sure it does anything more than drain your bank account. For my daughter, it did the later.

We also did patching of the good eye to strengthen the weaker eye. We did it to the drs. specifications but for my daughter, it did nothing. For some it helps.

The most important thing is to protect the good eye. Something simple like a speck of dust, a ball, looking at an eclipse can destroy the one working eye and you have no backup.

The brain is an amazing thing and HKBH set it up so that it makes the good eye see well enough for both eyes. Your child just has to be aware of the lack of peripheral vision when it comes to driving.

amother

Tue, Jul 14 2020, 4:06 pm

amother [ Mustard ] wrote:

It was so kind of you to share this information with me.

Thank you. It was so helpful.

amother

Coral

Tue, Jul 14 2020, 4:23 pm

amother [ OP ] wrote:

This is a great idea. Thank you.

Do you know of any doctors that do vision therapy in forest hills, ny or somewhere in ny?

I'm willing to try vision therapy

because anything done now may help a little.

I know of an OT who does vision therapy but in Brooklyn if you don’t mind going there.

I also took my son to developmental optometrists in Westchester that might be able to help with Prism glasses.

Let me know if you want their phone numbers.

Btw I’m from forest hills and miss it a lot.

Kiwi13

Tue, Jul 14 2020, 5:35 pm

I was born with severe strabismus and nystagmus. I had surgery at about 2 years old. The strabismus was under control for a few years and then worsened again. I wasn’t a good candidate for repeat surgery. I still have both conditions. My eyes only shake/jerk if one is open and the other closed, and over the years I did gain some control over it naturally. As a child, during eye exams I was told to keep both eyes open during the screenings (reading letters off a chart etc.) even when one eye was covered. (It would be covered but still open). It helped a lot.

My eyes do not work together. That’s something else that naturally “resolved” somewhat in time. Basically I adapted. My left eye is dominant and I use it for looking at things consciously. When I do that with my right eye it feels like writing with my left hand. My right eye is basically just peripheral vision. And actually, because I have such a severe turn, it gives me a very wide range of vision. It floats up and to the right naturally. In other words, it settles right at the level of my rear view mirror while I’m driving. I barely ever have to turn my head to look in the mirror. :-)

I have compromised depth perception but I’ve adapted well to that, especially since I was born this way. I don’t have 100% ideal vision, and the appearance of my eyes is my biggest source of body image insecurity, but all in all I’m blessed with functional vision and I’m grateful for that. It hasn’t held me back in life in any way.

amother

Tue, Jul 14 2020, 7:14 pm

Kiwi13 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.

snowflake1

Tue, Jul 14 2020, 7:22 pm

I have a lot of experience with strabismus nystagmus and other eye conditions from my kids. From your post, it is not clear if you went to see another top ophthalmologist since the one that you were using obviously missed something. it is always worth getting another opinion especially if the first was not so good.
Dr. wang in Scarsdale or Manhattan is very good.
dr Brooks in Manhattan Was recommended by Shuki Bermans organization . In general that organization is very helpful to find doctors they don’t only do based on insurance. they will tell you the top doctor in the field. If that doctor doesn’t except your insurance you could ask them if they have any other recommendations.

snowflake1

Tue, Jul 14 2020, 7:32 pm

Also, this is just my opinion but from my experience it is worth taking the traditional word before looking into alternative treatments and therapies. In this case, that would mean a top ophthalmologist in Nuro ophthalmologist before going to vision therapy and developmental optometrists.
And if he is indeed legally blind there are services from the state which I can give you more info about if that is going to be necessary

amother

Jade

Tue, Jul 14 2020, 7:49 pm

I have amblyopia I had surgery when I was 10 and it helped a lot you wont see my eye going out but its still there somewhat. till today I can sometimes forget to put on the contact lens for the eye that has amblyopia because I just dont notice. If I cover my good eye I can see but its hard to focus / read. I drive and do everything that any other person does the only thing I cant do is optical illusions or stare and then look away as I cant focus on one spot for very long.

amother

Tue, Jul 14 2020, 8:11 pm

amother [ Jade ] wrote:

Thank you.

The thing is my son had surgery already when he was 1 yrs old.

2 ophthalmologists told us that his eyes were fine, and the surgery was successful.

I as his mom noticed his right eye was not fine, but they dismissed my concerns.

So, since he already had surgery (and the dr told me the surgery does have a small risk of blindness), so I would not risk doing another surgery.

I'm thinking he may also have amblyopia in the right eye but it might just be nystagmus...we dont know bec his problem is very subtle (dr today saw I was correct when he said he cant see with his right eye).

I'm so grateful to everyone sharing here because some of this is guessing because he cant tell us what he can and cant see from that eye...he is too young.

I see you wrote that if you cover your good eye, you can see but cant focus/read....

This might be what my son has but we dont know because he doesn't read yet and just insists he cant see with his right eye.....

So, I'm going to gather all this information here and also go to another dr.

(Although I'm wary of only relying on the drs because I went to a top dr in great neck who dismissed my concerns and said his right eye is fine...bh my son's glasses broke which forced me to take him to this optometrist today who is very thorough, but now I'm looking for an opthamologist.

Thank you.

amother

Tue, Jul 14 2020, 8:20 pm

snowflake1 wrote:

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.