Convergence Insufficiency

[Connie]

I was going to IM u directly you have helped us so much I am proficient in this area if you have questions he is an hour away from us worth the trip Weidig trained Galloway who is in marlton, NJ who doesn't take insurance but will print you a bill to submit. I have seen many but Weidig has helped us and is far superior to all others he is old school in the therapy approach but gets results I have tried many over the yrs due to the hour drive and will see no others.

[lfran]

Just curious -- does your daughter (or anyone else's kid) have Duane's Retraction Syndrome as part of their strabismus issues? MY DS11 and I both have this.

It has been a verrry long day. Court, ds13 discharged from hospital, blood draw, settled back home......I haven't read the entire thread. The topic caught my eye. CI here with ds13. responded to vision therapy. One daughter had two eye muscle surgeries as a baby and toddler. strabismus. another daughter has some eye muscle problems, but eye glasses do the trick for her. I happened to notice that one of the identified genes with polymorphisms was a gene connected to eye muscles (something along that line) and/or drooping eye lids. I do not feel like going back to track it down right now. Just thought I would toss that out. I am not sure if there is any connection. Again, maybe I missed it in the thread. Dawn

[lfran]

Wanted to clarify, that even with Duane's, DS11 was a VERY early reader and was and still is an avid reader, to the tune of many hours a day, but we have no idea how well his eyes work together. Probably very little.

 

One very interesting tidbit. When DS11 was about 8, he was ticcing a lot at a restaurant, reading at the table while waiting for the food. My husband asked him if he could try to control it, and wonder of wonders, it stopped! When we asked him how he did it, he answered "I switched to the other eye". He has since retracted that statement and we have not seen similar results when we ask him to try to replicate it, but I still keep thinking about "out of the mouths of babes..."

 

By the way, I also have Duanes and have very little/no binocular vision. I basically only use my dominant eye. Not a big deal, at least not to me. Hasn't stopped me at all (would have kept me out of the military, probably, and I can never be a pilot). I read constantly, drive fine (parking is a challenge, but a backup camera in my car has cured that problem) and basically don't consider it an issue. So although I know it's a scary thing to think about only having vision in one eye, just wanted to put in my two cents as an adult for whom it hasn't been an issue at all. (I do have vision in each eye, I just don't *use* my left eye unless I close my right one).

 

Just curious -- does your daughter (or anyone else's kid) have Duane's Retraction Syndrome as part of their strabismus issues? MY DS11 and I both have this.

It has been a verrry long day. Court, ds13 discharged from hospital, blood draw, settled back home......I haven't read the entire thread. The topic caught my eye. CI here with ds13. responded to vision therapy. One daughter had two eye muscle surgeries as a baby and toddler. strabismus. another daughter has some eye muscle problems, but eye glasses do the trick for her. I happened to notice that one of the identified genes with polymorphisms was a gene connected to eye muscles (something along that line) and/or drooping eye lids. I do not feel like going back to track it down right now. Just thought I would toss that out. I am not sure if there is any connection. Again, maybe I missed it in the thread. Dawn

[lfran]

Bumping this, because I really am curious if anyone else has Duane's Retraction Syndrome (or kyphosis!)

Wanted to clarify, that even with Duane's, DS11 was a VERY early reader and was and still is an avid reader, to the tune of many hours a day, but we have no idea how well his eyes work together. Probably very little.

 

One very interesting tidbit. When DS11 was about 8, he was ticcing a lot at a restaurant, reading at the table while waiting for the food. My husband asked him if he could try to control it, and wonder of wonders, it stopped! When we asked him how he did it, he answered "I switched to the other eye". He has since retracted that statement and we have not seen similar results when we ask him to try to replicate it, but I still keep thinking about "out of the mouths of babes..."

 

By the way, I also have Duanes and have very little/no binocular vision. I basically only use my dominant eye. Not a big deal, at least not to me. Hasn't stopped me at all (would have kept me out of the military, probably, and I can never be a pilot). I read constantly, drive fine (parking is a challenge, but a backup camera in my car has cured that problem) and basically don't consider it an issue. So although I know it's a scary thing to think about only having vision in one eye, just wanted to put in my two cents as an adult for whom it hasn't been an issue at all. (I do have vision in each eye, I just don't *use* my left eye unless I close my right one).

 

Just curious -- does your daughter (or anyone else's kid) have Duane's Retraction Syndrome as part of their strabismus issues? MY DS11 and I both have this.

It has been a verrry long day. Court, ds13 discharged from hospital, blood draw, settled back home......I haven't read the entire thread. The topic caught my eye. CI here with ds13. responded to vision therapy. One daughter had two eye muscle surgeries as a baby and toddler. strabismus. another daughter has some eye muscle problems, but eye glasses do the trick for her. I happened to notice that one of the identified genes with polymorphisms was a gene connected to eye muscles (something along that line) and/or drooping eye lids. I do not feel like going back to track it down right now. Just thought I would toss that out. I am not sure if there is any connection. Again, maybe I missed it in the thread. Dawn

[lynn]

Don't have Duane's Retraction Syndrome, however I wanted to report that I found an optometrist that takes Blue Cross here in Queens. Took DS there last Saturday and unsurprisingly he had both the wandering eye and the focussing problems. He doesn't recommend the glasses for DS, just VT. We will give it a try-it was eerie to watch the dr cover one eye, tell him to look to the side, and have the doctor lift the cover and see the other eye looking somewhere else. DS is pretty jazzed to try it. He told the doctor that he often sees double and that he really enjoys reading but avoids it because it is so hard (never told me this).

 

I really hope that this works, because there is a reading problem clearly, and because DS wants it to so much. However, things typically don't work for us. It will be a clever little balancing trick to keep him committed enough to do the work and yet not totally convinced that it will absolutely fix everything.

[mar]

Ok, Queen of the Onion Peelers here, passing along yet another thing you can worry about and spend money on...

 

My kids have struggle with several facets of illness - methylation, pyroluria, lyme, Pandas - nothing black and white about our bears. Last month, a friend who's walked down some of these same paths with me, told me her son had just been diagnosed with Convergence Disorder - a kind of eye tracking problem that interferes with his ability to focus and read. She shared this blog with me:

 

http://thethinkingmother.blogspot.com/2008/04/ive-been-learning-about-convergence.html

 

My daughter was diagnosed with "lazy eye" by her pediatrician 3 yrs ago (using some device that attached electrodes to her head). We were referred to a pediatric eye doctor who prescribed eye glasses for an astigmatism. Come to find out he never tested her for lazy eye. Only whether each eye could see 20/20. She has always insisted her glasses don't help. Now I think I know why. Because they aren't helping her binocular vision.

 

I took my son for an evaluation today (surprise - the three docs in my area who treat convergence insufficiency don't accept insurance - you submit your own claim and I get reimbursed 60% for using an out of network doc). She detected several issues with how his eyes are working with his brain (or not working). It impacts his reading, his comprehension and his coordination. It can also manifest as ADD/ADHD. He'll be getting special prism glasses next week. The lens is a bi-focal, with the top having no prescription (because he has 20/20 vision) and the bottom will be a prism lens that makes light and objects converge in a way that will help his binocular vision. He is NOT happy because he is very worried about being teased. But I'm hoping they help enough to make it worth while.

 

He will also need something called vision therapy - weekly visits for some sort of computerized occupational therapy that re-teaches the eyes and brain to work together on a neurological level (as opposed to some sort of muscle strengthening exercises). My first worry was that this was some sort of unproven theory but it's apparently legit. My daughter goes for her initial evaluation next week (I'll be getting the family discount - woohoo (where's the sarcasm button?).

 

The up side is that the doctor provides a write-up for the school, which would give him a 504 if he didn't already have one and will give documentation needed for OT and additional 504 accommodations he doesn't currently have.

 

So I pass this along for anyone who's child may struggle with reading or writing and your gut tells you it may be part of a learning disability beyond PANS. My friend who shared this with me says her son has seen significant improvements and school work has gotten easier for him.

Wow!!!! Thank u so much for this post!!! It's crazy but this is my ds! The whole time I am reading this my mouth is open!!! He read fine when he was younger but does not like chapter books with no pics. He has complained of headache when reading and doing too much hw at a time. He is in 5th grade. He can't read In car feels sick. I sat down with him a month ago to read his reading book bc his grades are the worst ever this year. He reads slow (his 2nd grade sister could read faster) he really seems to struggle to focus he will look away and ask where was he. I have noticed him skip a line. I complain for him to speed it up! At times he will lose consitration and look away or ask a question that does not relate to story. I feel like I am always saying pay attention! Even during hw or everyday things I am like are you listening look me in the eye and when he finally does he looks away and back and looks like he is struggling. I assumed this is lazy and being defiant. But as I read through this I was amazed. What really got me was 3 years ago when I got tests done for food through nath. Doc she said his shoulders look uneven!! This is a symptom. Also he is in all sports and will occasionally miss a ball when it is right there in front of him. He got glasses a couple of years Back for slight astigmatism. Needs them during school and tv or computer. Did this bc I wear them and was shocked bc he never complained. He said he sees the board better. Anytime it comes tk reading he struggles and tries to get away. Whether its a test to study for or homework. When he does read bc I have to force it he seems tired and always asks how long has it been so he could put his 15 min down on his log for school. Last but not least a month ago I will never forget this day me and dd were upstairs ready to read some books with pictures just to cuddle. Ds ran upstairs and jumped in. Me and dd usually read a page each and ds was ready to jump in and read his page all fast and accurate. I wondered why he was so excited to read with us and read a lot quicker. He always loved to read but when he got older and chapter books with smaller print came around his whole additude took a nose dive. He now saids he hates to read but if he is read too his ears are open! I could go on but really need to get him tested for this. It would explain. A lot!!

Mar

[MomWithOCDSon]

Wow. I hadn't checked into this topic previously as I didn't really see anything that was applicable to my DS. But then a friend reminded me that her kids had been diagnosed with convergence insufficiency (CI), so I thought I'd read through this thread and see what it was all about.

 

Thanks, especially, for the link to www.childrensvision.com. The examples posted there were very helpful in explaining to me how this condition manifests.

 

Frankly, those examples combined with the mention of CI being frequently diagnosed along with various neurological disorders because of the basal ganglia connection . . . well, suddenly it all makes sense. These vision things really could be another piece of the inflamed/attacked basal ganglia puzzle, no?

 

Another thing that struck me is that I have noticed some of these reading/vision differences in myself at times, particularly during allergy season or pre-migraine, as in, before I have any actual pain, dancing lights, etc.

 

So, perhaps this is a condition that can/will set itself aright post-inflammation? But I suppose, like with some of the other behaviors (such as OCD), if the sufferer contends with it, and compensates for it, long enough, without medical and/or behavioral interventions, then it could become a stickier, more prevalent condition even beyond periods of flare or illness.