Input on strabismus

[alicai]

DD5 has strabismus in the right eye. Each eye is 20/20 but the two eyes don't track together properly. Every time her vision crosses the midline, the right eye jumps around and she has to refocus.  We started with an optometrist (who does VT and came recommended) about a year ago. He prescribed glasses to try and limit the degrees of rotation in the right eye and retrain it. That didn't work. At the last appointment, he moved her to bifocals (progressive). He said she has 18 degrees of rotation in the right eye and the bifocals would limit it a little bit more.  This seems to have actively made the strabismus worse. Is this possible? She now says she is uncomfortable without the glasses and she looks to me to have a lot more inappropriate movement in that eye.

He suggested that we delay reading while we worked on the problem and this was understandable to me because of the midline issue, but it has been hard to hold her back. She is reading cvc words but I can see where reading sentences is going to be a problem. A year ago when we started treatment, I wasn't too worried about this. I am getting very worried now because the condition is worsening. Looking for input from anyone with experience with this. TIA.

[Hypatia.]

Not quite what you're looking for, but DS3 (now 5) was diagnosed with accommodative esotropia when he was 3. His right eye would turn so far inward (at the peak) that you could barely see the iris. He got glasses when he was 3, and then we started patching. We initially thought his brain was using his right eye, but once we started patching it became evident he was struggling with that. He would get iPad time during patch time, and the first couple days the way he was holding the iPad and moving his head to try to see it was heart-breaking. His crossing was still very noticeable with the glasses, and when his glasses were off was worse than it had been initially. We patched for a year and during that time his vision improved in that eye but not the turn. He ended up having strabismus surgery (right side only) in December.

[PeterPan]

You may need a different COVD doc, a Fellow. Also it sounds nutty but I've heard of people improving it with chiropractic.

I would at least want a 2nd opinion from a COVD Fellow. 

Are you using audiobooks?

[J'etudie]

Dd was dx’d with bilateral accommodative esotropia and began wearing glasses at 2.5. All her care was provided by a pediatric ophthalmologist. That’s the only place I felt comfortable having her evaluated and treated. After 5 years she no longer needed glasses. 

[Pegs]

My DS has midline jumps (saccadic intrusions?) which affect his tracking. Both the vision therapist and the chiropractor have told me it's related to retained primitive reflexes. It's improved a lot with vision therapy, and his stamina for reading has improved phenomenally. 

[alicai]

5 hours ago, Pegs said:

My DS has midline jumps (saccadic intrusions?) which affect his tracking. Both the vision therapist and the chiropractor have told me it's related to retained primitive reflexes. It's improved a lot with vision therapy, and his stamina for reading has improved phenomenally. 

Is it just midline jumps or does the eye inappropriately go inward toward the nose? I can see even just from these posts that the doctor we've been seeing has withheld a lot of information from me, despite my constant questioning, so I'm trying to dial in on her problem. Clearly we need a second opinion.

[alicai]

8 hours ago, J'etudie said:

Dd was dx’d with bilateral accommodative esotropia and began wearing glasses at 2.5. All her care was provided by a pediatric ophthalmologist. That’s the only place I felt comfortable having her evaluated and treated. After 5 years she no longer needed glasses. 

That's encouraging. I think accommodative esotropia might be what DD has although the doctor has never told me that. What was the glasses rx if you don't mind me asking? Bifocals? Did you also do VT?

[J'etudie]

The original prescription was between +3 and +4 in each eye (I don't remember exactly). She would have needed bifocals if her farsightedness was more severe, but that didn't happen. She did not do VT. Her eyes didn't jump; they just turned in to her nose. The doctor said it was because she was so farsighted (which all kids are but some are worse than others) that she had to strain her muscles to try to focus. The glasses allowed her eye muscles to relax, and that's what prevented the turning in.

If you can see a pediatric ophthalmologist, I would highly recommend it. There were only two in my HMO (in a gigantic, metropolitan area) and the one who treated dd was moved to an office an hour away, but I felt confident in her care so we made the trek.

[kbutton]

On 4/9/2018 at 10:25 AM, alicai said:

DD5 has strabismus in the right eye. Each eye is 20/20 but the two eyes don't track together properly. Every time her vision crosses the midline, the right eye jumps around and she has to refocus.  We started with an optometrist (who does VT and came recommended) about a year ago. He prescribed glasses to try and limit the degrees of rotation in the right eye and retrain it. That didn't work. At the last appointment, he moved her to bifocals (progressive). He said she has 18 degrees of rotation in the right eye and the bifocals would limit it a little bit more.  This seems to have actively made the strabismus worse. Is this possible? She now says she is uncomfortable without the glasses and she looks to me to have a lot more inappropriate movement in that eye.

He suggested that we delay reading while we worked on the problem and this was understandable to me because of the midline issue, but it has been hard to hold her back. She is reading cvc words but I can see where reading sentences is going to be a problem. A year ago when we started treatment, I wasn't too worried about this. I am getting very worried now because the condition is worsening. Looking for input from anyone with experience with this. TIA.

I think you need another COVD opinion. My son has 20/20 vision, but one of his eyes would bounce at the midline as well (both eyes would track inward as objects came closer, and then suddenly one eye would move back out). He had just about the shortest course of VT in history, and it was super helpful. He had other midline issues, but the eye was the only one that was consistently on the same side. For instance, he could not make both sides of his body do the same size movements (for instance, arm circles--one arm made large circles and the other small circles), but if he concentrated on making the "small" side bigger, then the "big" side would get small! 

Anyway, VT made all the midline/bilateral issues go away. He does need to do some minor Brock string exercises after a growth spurt, but otherwise, everything stuck from VT.

As our COVD person (who moved, sadly) said, it's in the brain, not in the body. 

The rest of this is me thinking out loud, so I may be totally off...
I can imagine glasses potentially making it worse--the brain can shut off processes it can't reconcile (and vision is something it's trying to reconcile, so the eye moves, or the brain shuts off vision to the eye, if I understand correctly). Bifocals are yet another change. Now the brain, which has not been re-trained through movement and feedback, is trying to reconcile that there are now two potential areas of focus in front of your daughter's eyes. I don't know why she might be uncomfortable without the glasses though. Maybe it reduces strain in one direction without actually fixing the other problems. Most kids that age are still a little bit farsighted, so it's possible that one part of the bifocal Rx is helping with the (natural) farsightedness that 5 year olds have. With the other stuff going on with her eyes, probably any relief feels good to her even if it's not the part that "needs" relief. 

 

[kbutton]

https://www.aao.org/disease-review/strabismus-accommodative-esotropia

This article makes me think that since your DD has 20/20 vision, this really isn't a glasses Rx thing as it is with J'etudie's child. Or, maybe your DD needs a tiny Rx/bifocals for developmentally appropriate farsightedness WITH a course of VT. 

But this article seems to suggest that accommodative esotropia (at least as discussed here) is NOT something you can have with 20/20 vision and developmentally appropriate farsightedness. I admit to scanning parts.

The fact that your DD's issue is one eye only and so much like my DS's makes me think you just need a COVD who is more aggressive about VT that includes body work and work on retained primitive reflexes. 

And to be clear about my DS, his eyes looked like they were acting normally (they were aligned at rest) only when you would do something like take a pencil and move it closer to his face while asking him to look at it. He didn't have an outward turn if he wasn't tracking an object as it came closer. The COVD could get his eyes to do some other wonky stuff, but only once he was super fatigued. Then he kind of fell apart and show many more symptoms.

If your DD has an eye turning all the time, then it sounds less like my son's issue or just a lot more severe.

I would still want an opinion from a COVD doc. I love ophthalmologists for some things, but they would be my LAST resort for a developmental vision issue unless they "believed in" VT and used surgery as a very, very last resort. It is too often a turf war. (We do see a pediatric ophthalmologist for other issues that are not developmental.) 

[J'etudie]

2 hours ago, kbutton said:

I would still want an opinion from a COVD doc. I love ophthalmologists for some things, but they would be my LAST resort for a developmental vision issue unless they "believed in" VT and used surgery as a very, very last resort. It is too often a turf war. (We do see a pediatric ophthalmologist for other issues that are not developmental.) 

This is a good point about finding out the underlying cause so you can find the best provider. There is overlap, of course, which leads to the issues kbutton mentions, so you really have to figure out what the issue is you're trying to correct.

My dd could see just fine up close despite her moderate farsightedness *because* she strained her muscles to do so. A special dilated exam (3 days of atropine drops before the appointment) revealed just how farsighted she was. In fact, she "passed" her first eye exam with the ophthalmologist because she could strain her eye muscles to focus in spite of the regular dilation drops. It wasn't until I took a picture of her with one eye completely turned in that the dr. ordered the other dilation and found the issue. 

The eye jumping around is distinctly different from my dd. OP, your mommy instinct is right to pursue more opinions and information until you are confident the issue is being treated correctly. ((hugs))

[kbutton]

1 hour ago, J'etudie said:

This is a good point about finding out the underlying cause so you can find the best provider. There is overlap, of course, which leads to the issues kbutton mentions, so you really have to figure out what the issue is you're trying to correct.

My dd could see just fine up close despite her moderate farsightedness *because* she strained her muscles to do so. A special dilated exam (3 days of atropine drops before the appointment) revealed just how farsighted she was. In fact, she "passed" her first eye exam with the ophthalmologist because she could strain her eye muscles to focus in spite of the regular dilation drops. It wasn't until I took a picture of her with one eye completely turned in that the dr. ordered the other dilation and found the issue. 

The eye jumping around is distinctly different from my dd. OP, your mommy instinct is right to pursue more opinions and information until you are confident the issue is being treated correctly. ((hugs))

1

From what I understand, kids with odd issues can be particularly hard to figure out sometimes due to their amazing ability to compensate with those young muscles! 

This might be a good time to add to the discussion that a doc who works with the InfantSEE program will probably have an interesting perspective and experience base to add as well. http://www.infantsee.org/

 

[alicai]

22 hours ago, kbutton said:

If your DD has an eye turning all the time, then it sounds less like my son's issue or just a lot more severe. 

It doesn't turn in all the time. I first noticed the slight inward turn when she was a baby. In fact, I have a picture of it. I was not overly concerned about this because DD9 had the same thing and it just went away over time. This caused me to wait longer than I otherwise would have before seeing a doctor. But once she was 4 and it was still happening - at that time it was maybe once a day I would notice it -  and I knew reading was coming up, I became more concerned.

What's happening now is that as soon as she takes off the glasses, the eye immediately turns. She feels uncomfortable while her eyes adjust and then it improves. If I sit to her left, the right eye is turned to focus on me. If I sit right in front of her, it's all fine. The point there being, the eye is not turned at all times, but much more than before the bifocals. It's seeming like from my reading that that is because the bifocals have allowed the eye to rest a lot more. 

I've found a COVD fellow an hour from here or a well-liked pediatric opthamologist nearby. The opthamologist does not seem to do VT. 

[PeterPan]

It sounds like it would be good to call the COVD fellow, talk with them, and just see what their experience is with this and how you handle it. There are lots of ways to skin a cat. The challenge is that an intervention (say that step of the glasses to relax the focusing strain, a well known phenomenon that VT docs use too for certain things) might work for some cases and not be enough for the next. And your big goal is to go through all the other options before ending up at surgery. Like the chiro, stupid cheap option, who knows. For real I've heard it benefiting some kids. And then I know other kids who ended up with surgery. The surgery can fail and have significant side effects sometimes, so that's why people are throwing out options here. 

See how much you can talk with the COVD doc before plunking out tons of money. Email, ask to talk to the lead therapist, ask if the doctor could call you, just whatever, kwim? Some places do parent info nights where you can go meet the docs. Just go see what you can find out. Info is your friend. And that's rough when you feel like your waiting has made it worse. I'm in that position with my ds, where someone could, in theory, look back with their omniscient hindsight and say wow, why didn't you do xyz? We all do the best we can. You're taking steps now and you're moving forward now, and that's all that matters. 

Keep us posted! :)

[kbutton]

38 minutes ago, alicai said:

I've found a COVD fellow an hour from here or a well-liked pediatric opthamologist nearby. The opthamologist does not seem to do VT. 

2

I would not expect an ophthalmologist to DO the VT, but some might have a favorable opinion of VT under clear-cut circumstances (be VT "friendly"). I think it's also likely that this won't just be glasses or VT.

Your DD's eyes are definitely turned under a lot more circumstances than my son's were. My son's eyes would not noticeably turn in, ever, unless you did something specific to provoke it. Not sitting to the side, etc. He basically couldn't cross his eyes on purpose, and he couldn't do pencil push-ups. At some point, the eye might have done more serious turning as he got older and did more academic work, but he didn't have any issues as a baby, toddler, etc., and there was nothing noticeable day-to-day. In hindsight, we realized he had trouble catching or hitting a ball, and once his vision was working correctly, he could point to vision as being part of the problem with focusing on a ball moving toward him. 

I also read "worse" with glasses as being worse while the glasses were actually being used. You more recent reply is more clear. She needs to wear them all the time, I presume. I would ask your current COVD what the long-term plan is. Is your DD likely to have enough improvement with the glasses to outgrow all her problems? Would VT help her issue? Is this a step-by-step process where they use the glasses and see how much improves, and then they switch to VT?

It could be that your current COVD is not a big explainer but is doing a great job.

I also think that you probably want to know if there are other bilateral coordination issues that your DD is dealing with--if so, a good PT or OT that works with midline integration and primitive reflex work might prep your DD for a specific course of VT down the road that will boost what the bifocals are doing.

[alicai]

Thank you so much to all of you for the info and support. It has been very helpful. I was able to obtain a copy of her chart today from the dr's office and here is what I've learned:

The current diagnosis is:

-Accommodative Esotropia OD right eye

-Visual Disturbance Unspecified, right eye

-Paresis of Accommodation OU distributed on left and right eyes

His notes mention at the midline both eyes now jump by 20PD. The notes suggest 3-4 months VT - oculomotor, fusion, and accomm. I'm not sure what the differences are there.

[kbutton]

1 hour ago, alicai said:

Thank you so much to all of you for the info and support. It has been very helpful. I was able to obtain a copy of her chart today from the dr's office and here is what I've learned:

The current diagnosis is:

-Accommodative Esotropia OD right eye

-Visual Disturbance Unspecified, right eye

-Paresis of Accommodation OU distributed on left and right eyes

His notes mention at the midline both eyes now jump by 20PD. The notes suggest 3-4 months VT - oculomotor, fusion, and accomm. I'm not sure what the differences are there.

2

I didn't read this whole page, but it had some good definitions on it for oculomotor (similar term on this page), fusion, etc. http://www.children-special-needs.org/questions.html

Accommodation: https://www.aao.org/bcscsnippetdetail.aspx?id=0554ca9e-b088-4bfe-91ab-2fc77bb0ea67

Each of these aspects of vision has specific therapies associated with it. Fusion, for instance, involves a lot of looking at sets of images that get more difficult over time and making your eyes see them together in 3D. That's a really rudimentary description, and there is often other underlying work to do before the eyes can do this--Brock string exercises, etc. Accommodation is almost always remediated with accommodative flippers, which are one of the least favorite things about VT, lol! 

It sounds like this COVD has a plan. You might just need more basic information in order to have a good, mutual conversation about it, and it's something that is a little weird to wrap your head around until you see it. One thing you might ask is if your DD will get a tailored course of VT, or if all patients receive the same therapies. Some places take all the kids through all the hoops. Other places tailor VT for each child. One is not necessarily better than the other as long as it works, but it can certainly be more or less expensive depending on how it's tailored.