Convergence Insufficiency

[LNN]

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.

[lynn]

Very interesting. I've been thinking for a while that DS's inability to concentrate on reading is something like that, but none of our docs have really focussed on it. Is there a special doctor type I should look for?

[kos_mom]

They are often called developmental optometrists.

[DeterminedMomVA]

My DS has the same thing, identified 5 years ago, pre-PANS. We've addressed it with only corrective lenses, and not vision therapy, which can be expensive, tedious, and controversial. You need to see a developmental optometrist for an evaluation.

 

Here's some information:

http://www.novavisioncenter.com/custom/12/Developmental_Vision.html

Edited October 4, 2012 by DeterminedMomVA

[LNN]

I found mine from a referral from this site

http://www.optometrists.org/findeyedoctordirectory/

 

You can also search for behavioral optometrist

 

Mine is about 30 min away. But the docs seem to know each other. So if you find one who's a bit of a hike, you might ask if they know someone closer to you. It could be that not every doc belongs to the above organization. Turns out there's also a second doc I could see who's about 30 min in the opposite direction who did not show up on the referral list.

 

Also, fyi - not all eye glass places can fill the prescription. My doc sent me to an optometrist down the street from her because the lens crafters in our areas can't make the particular type of lens that's required. It's not cheap - $200 for initial exam, $475 for comprehensive exam+written evaluation+parent meeting (to get DH on board), then $125/wk for vision therapy. These are all considered medical and I need to submit to our medical insurance carrier for 60% reimbursement. The glasses will be $380 (depends on your frame choice of course) that will hopefully be covered by our eye care insurance.

 

Did I mention I have 2 kids that probably have this??

[LNN]

My DS has the same thing, identified 5 years ago, pre-PANS. We've addressed it with only corrective lenses, and not vision therapy, which can be expensive, tedious, and controversial. You need to see a developmental optometrist for an evaluation.

 

Here's some information:

http://www.novavisioncenter.com/custom/12/Developmental_Vision.html

Does Ds still wear the glasses? Does the need for them go away as the eyes correct themselves? Or is this a long haul situation?

 

I've read that the therapy is controversial but can you explain why? And who's on each side of the debate (when I dug into the lyme "controversy" it became clear that I agreed with one side overwhelmingly more than the other, so not really controversial for me). Wondering if this is "it's just unproven" or if one group of professionals has an ideological difference with another group on a grander scale.

 

Obviously the cost means we'd better see some bang for our buck or it won't be a long term thing.

[Dedee]

Well dang...really, another contraversial thing? I have taken my daughter to the eye doctor 3 times in the last two years because she insists she can't see. Eye doctor insists she can see just fine. I thought she just wanted glasses like her brother. Sometimes she grabs my reading glasses and wears them saying it's easier to read with them. What the heck?

 

Dedee

[StillHopeful]

Very interesting. I am taking my DS on Sunday to a developmental optometrist. Just to confirm I check his name on the search engine you posted LLM. Do you recall any specific test you asked for? My DS says he sometimes reads the wrong line or puts a letter in the word that isn't there. He also reads very fast and appears to be "careless" when he reads. He hates reading although is actually good at despite the reading issues. He gets very anxious when he has reading hw and if there are multiple pages/paragraphs I usually have to read to him to get it done. (what a joy) I always thought he had an issue so I thought this was a good way to rule something in or out. It also occurred to me it could be an OCD or anxiety that is causing him reading issues. Thanks for sharing.

[cobbiemommy]

My son has Convergence Insufficiency. He also has amblyopia (lazy eye) and astigmatism (dad and sis have astigmatism as well). Here is the strange part of the story. After he had his first IVIg we went back for a scheduled eye exam, he is seeing better. The doctor did not know what we had done medically since his last appt, so he was very surprised when I filled him in. He was also not surprised that the IVIg helped.

 

That being said, we still had surgery for the amblyopia this past summer. Son is doing very well and loves the way that he is seeing the world. He still cannot see things in 3D, but not everyone can see 3D anyway.

 

Very interesting.

[philamom]

My daughter has been begging me to take her to an eye doctor lately. With all thats been going on, haven't had a chance to take it a step further. It came on so sudden about 6-8 weeks ago (b4 school started).

[DeterminedMomVA]

Here's an article that explains some of the controversy: http://www.nytimes.com/1996/02/18/nyregion/dispute-expands-over-vision-training.html?pagewanted=all&src=pm

 

My DS learned to read early and very well. He could read picture books fluently, which are sometimes written at a very high level, before Kindergarten. When it was time to move to chapter books, he struggled, and his first grade teacher said that he entered first grade reading above grade level but that he was lazy, resisted reading, and made no progress throughout the year in increasing his reading level. He could read picture books fluently and clearly, but in chapter books he would lose his place, repeat words, lose which line he was reading, etc. I finally figured out it might be a vision problem, and took him to a highly respected developmental optometrist in the area in the summer between 1st and 2nd grade, who diagnosed convergence insufficiency, tracking problems, and something else, despite DS having 20/20 vision. He prescribed glasses, which made an immediate difference in DS's ability to focus and track when reading chapter books, which had smaller font and more closely spaced lines than picture books...suddenly he could read above-grade-level chapter books fluently, too! The developmental optometrist said that he could do vision therapy if we wanted, but that it was expensive and tedious (not at all fun) and that he thought DS would outgrow the problem. Two years later DS stopped wearing glasses to read. He had an eye appt this summer, and still has tracking/convergence problems, but apparently he's learned to compensate for them. The Dr. said that he would prescribe glasses if DS wanted, but DS declined.

 

The controversy arises, I think, because of some unethical optometrists, who prescribe vision therapy even when it may not be needed. It is very expensive and there are mixed reports about how effective it is. We went to a reputable optometrist, and were happy with the outcome.

Edited October 6, 2012 by DeterminedMomVA

[LNN]

Thanks for the link. More recent PubMed stuff seems to indicate the controversy still exists but apparently some legit studies indicate the office visits may help. Like I said, we will have to see noticeable improvement to do it for very long.

 

I did find something called EyeWiki that said this

 

Convergence insufficiency is also associated with several neurological disorders. Neuro-degenerative diseases affecting the basal ganglia, such as Parkinsons Disease, Progressive supranuclear palsy (PSP) and Huntington’s Chorea have a higher incidence of convergence insufficiency3,17,18.

http://eyewiki.aao.org/Convergence_Insufficiency

 

Now, I take Wiki with some skepticism - after all, read its Pandas page. But I thought it was an interesting connection to the basal ganglia. I do know DS's reading gets better when he's healthy. Ok - health-ier than he is right now.

 

I also found a page from Boston Children's Hospital that embraced vision therapy for certain aspects of CI (as you said, there are apparently 3 types of issues with CI). But given the recent events, I wasn't about to tout BCHs opinions

[sf_mom]

We have/had lazy or wondering eyes as well.

 

The lazy eye came on suddenly in two children. These are our eye exams from over the last couple of years for older DS, 20/40 (4 years of age), 20/50 (5 years of age), 70/100 (age 7 and lazy left eye). We ended up patching the one eye for about a year before and after school. He is now 8 and his vision is now 20/20 in one eye and 20/30 in the other and expected to fully correct. The lazy eye and vision problems occurred when we 'started' treating for Babesia last year. I would have chalked it up to a coincidence with timing of Babesia treatment but then we started treating younger DD for Babesia and the same thing happened. She almost looked cross eyed and her eye was much worse than older DS. The eye wondered often and wasn't consistently lazy. It was very strange. It too has 'almost' fully resolved with treatment. We were only able patch her eye a few times. We did not vision test her like older DS.

[KaraM]

LLM...you always seem to be a few steps ahead of me...I will forever be in your debt. :wub:

Although I truly wish you did not have to forge my or anybody else's trail.

 

We just started looking into this last week for our dd who HATES to read, complains of skipping words and lines. She reads at grade level...but just barely. And there is a piece of me that knows she should be capable of more. (Call it the mother's intuition that I have come to now trust more than doctors).

The son of a friend of ours was having reading difficulties and they eventually tried the vision therapy with success. So I started looking into it more and called the doctor in Boston that they saw (Dr. Lauder or Lauden).

They advised to first have a regular eye exam first, then call them after. So we are starting there.

 

While doing my research, I found a site that shows examples of what text may look like to someone with a convergence disorder. There are a few different varieties. Here is the link if anyone is curious. My dd said she has the word jumping and sometimes the blurring.

 

http://www.childrensvision.com/reading.htm

[Fixit]

Another panda mom and i were just discussing this, this week. The exact eye thing that both of our boys seem to have in common, besides a few other things.

Anyway, because of that conversation i started ds on eye exercises again that i learned from Brain Balance.

Another thing that helped ds early on was an overlay.

The concept is that the glare from the white paper, and/or the flourescent lights creates a problem and makes it difficulat to track. The fluency with the overlay was amazing.

supposedly different people need different colors, red, blue, green etc.

I notice it was more comfortable for myself to read with it too, especially when you are trying to read a glossy magazine.

 

Ds eyes seem better than when he was younger, but i seemed to have noticed a bit of laziness again since a major flare.

 

i forwarded this thread to my friend. i might check into at some point too, if needed.