Convergence Insufficiency

[AmySLP]

My daughter had this as well...dx. The same year she was dx, with pandas.

[JAG10]

I agree with Amy. My dd12 received this diagnosis and therapy years ago, given glasses for focus which sit somewhere collecting dust. She skipped many of the little function words in reading like she didn't even see them. Heck, sometimes she forgot which direction she was to read in! It all went away with pandas treatment.

 

I honestly felt at that time that there wasn't a diagnosis that we couldn't score for her if we wanted it. I don't know Laura. I'm starting to sound like the most anti-therapy therapist that every existed! Even in the schools, I know, pretty much upon evaluation, which kiddos I can really help and which kids are fighting a current so strong neurologically that only medical intervention will be their significant key and I'm just dancing as fast as I can to help keep them afloat.

 

What I've heard is that vision therapy can show similar improvement to computerized programs like FastForward for focus or any of the other brain-based software. Some moderate gains are sustained with successive use. Stop the program or therapy and the gains vanish, but there is no corrective improvement.

[LNN]

Kara - Thank you for this link! DH has been giving me the eye roll over this. He thinks I can't leave things alone. That I'm looking for trouble and some sort of magic fix. He about dies when I mention the costs, so I've stopped telling him. He's biting his tongue about my taking Kid #2 for an exam next week. But when I opened your link and asked DS if any of these eye problems happened to him, he mumbled yeah, sometimes (still deeply upset over the glasses, so he's trying to downplay that anything's a problem). So nosey sister peaks over at the screen and chimes in - "oh yeah, those bouncy words happen to me all the time!". That clinched it for me and removed all doubt that she needs an evaluation. It also really helped me understand what the kids are struggling with.

 

Jill - I actually appreciate your skepticism. You're my counter-weight (along with eye rolling DH). It's so easy to get sucked into the promise of things that might help. So it's good to have a wet blanket friend You're keeping my expectations realistic and reminding me to be an educated consumer who spends money judicially. I'm generally a real cheapskate but when it comes to the kids' health, I throw that out that window. So I need that small voice reminding me to be measured.

 

That said, it seems there are three general issues that get lumped under convergence insufficiency - eye teaming, tracking and focusing. My gut suspicion is that the vision therapy probably doesn't help all three issues equally. Yet the research and clinical diagnoses don't always distinguish between these sub-issues. So an anti-therapy camp probably says "it doesn't work better than placebo" and that's probably like Singer saying Pandas doesn't exist, because he didn't look at the right sub-group of kids in his study. Yet the pro-vision therapy camp is probably including more kids than they should as well.

 

So I'm guessing that the therapy might help some of my kids' issues, the glasses may help but not eliminate some issues, and it will be a bit of an expensive crap shoot because medicine hasn't advanced to the point where anyone can tell if it will work ahead of time. It's probably the best thing since sliced bread for some and a waste for others. My gut tells me it will probably help DD most because she doesn't have a chronic issue with PANS - she enjoys longer remissions, her brain isn't constantly in a state of seige. I suspect that DS has some basal ganglia issues that make his convergence issues better or worse depending on how his lyme is acting. In his case, maybe therapy will be less effective because it's trying to fix something that's just too inflamed at the moment. Just like ERP isn't that effective when you're in the peak of a flare. But it doesn't mean it doesn't work ever. So, we'll pursue it and see. I'll just be willing to throw less money at therapy for DS than for DD and more willing to stop or postpone therapy for him until he's back in a good place. But still hopeful the glasses will help (and unfortunately won't know that until the money is already spent).

 

Thanks for everyone's help on this. You guys rock!

[LNN]

double post

Edited October 5, 2012 by LLM

[jtp]

My DS12 was diagnosed with convergience insuff when he was 1 1/2 years old. The pediatrician said he had a lazy eye and the Opthamologist said there was nothing wrong. I knew something wasn't right so I brought him to Pediatric Optometrist and then he was diagnosed properly. He started vision therapy in small doses at home, using a straw then as he got older we used more intense therapy at home.

 

I can say that this really really helped my son. Today he's 12 and he's an amazing reader and writer. I was lucky that he started early and was able to do most therapy at home inexpensively. We did not use any of those special glasses. Vision therapy is very time consuming but does produce results, at least in our case. He still has convergience issues but we keep a set of beads(used in VT) that he will use occasionally to remind his brain to use his eyes as a team. When he's over tired or sick the CI will pop up again.

 

All in all we were happy with the results of Vision therapy.

[Dedee]

So after reading everything, I really think my daughter may have this. I'm looking for someplace to get her evaluated. Did you all say that insurance doesn't pay? Is it better for them to just get glasses or does the therapy really work? Probably just like everything else in PANDAS, have to try it to know. Uggg.....one more thing. LLM.....leave no stone unturned girl!

 

Dedee

[LNN]

So after reading everything, I really think my daughter may have this. I'm looking for someplace to get her evaluated. Did you all say that insurance doesn't pay? Is it better for them to just get glasses or does the therapy really work? Probably just like everything else in PANDAS, have to try it to know. Uggg.....one more thing. LLM.....leave no stone unturned girl!

 

Dedee

D- in my case, the doctor doesn't take insurance (shocking, I know). So we submit the claim ourselves. She will be considered an out-of-network provider and we should be reimbursed 60% because of that. The glasses themselves I think will need to go through our vision coverage (separate insurance) and I'm hoping will be at least partly covered by that.

 

I'm pretty sure both kids will end up with the prism lenses and we'll probably give VT a trial. From reading up, and knowing DD7 was dx'd with lazy eye at age 4(and NOT treated by the lame eye dr we were referred to - GRRR), it sounds like her brain may have stopped relying on one eye for info and she may need a patch for a few hours a day - oh, that'll go over big!

 

Some docs seem to rely on just glasses, others do both at the same time. The doc we're seeing does a 1 hr initial exam and if she sees stuff, you go back for a 2hr eval to zero in on specific issues and specific therapies that might help. So we probably won't be doing any actual VT for a few weeks. But I'll let you know how it goes.

 

On a positive note, DS has had 24 hrs to get used to the idea and is calming down about it. DH had the great idea to say DS could wear them at home for a week to get used to them before having to wear them to school. DS was relieved by that idea.

 

As for no stone unturned, man, some days I feel like I look too hard! My curiosity far exceeds my bank account.

[sf_mom]

If you are going to patch you might as well make it fun. My kids liked 'just' the different colors offered and not the decorations.

 

http://funeyepatchkitsforkids.com/Home_Page.html

Edited October 5, 2012 by SF Mom

[mimip]

I'm going to apologize in advance because I have a lot to say about this. I will try to keep focused, but there is a lot of crossover of issues and overlapping factors.

 

Four out of my 6 kids have been evaluated by a Behavioral Optometrist, including my 9 year old daughter with PANDAS. Three needed vision therapy, and 3 needed glasses, but not the same 3. In other words, there was 1 who only needed glasses, 1 who only needed VT, and 2 who needed both. Also, my husband is legally blind, has complete color blindness (sees no color), as well as other related eye conditions. He also had Lyme and saw an eye dr specializing in Lyme in the same office.

 

The appointments and the vision therapy were all covered by insurance. Here is the link to the doctor:

 

Office:

http://www.newenglandeye.org/

 

Doctor:

http://www.newenglandeye.org/our-locations/providers/richard-laudon/

 

Just to explain a little of what I've learned. A basic eye exam only measures visual acuity, written as a number compared to 20, such as 20/20 vision. This is what glasses help with. In a more comprehensive exam other things will be looked at such as the retina, optic nerves, eye pressure (very important for lyme patients), refractive error, and eye behavior (related to the eye muscles).

 

Refraction is basically how light rays hit the retina. Refracrive error measures if you are far sighted or near sighted, or just right with no "error."

 

Eye behavior is what is being talked about in this thread and what vision therapy helps with. The areas of eye behavior are convergence (eye teaming), accomodative behavior (eye focusing),and ocular motor behavior (eye tracking). They will also look for strabismus (eye turning) and amblyopia ("lazy" eye). So, the corresponding eye problems are convergence insufficiency (eye teaming problem), accomodative dysfunction (eye focusing problem), and ocular motor dysfunction (eye tracking problems). You can have one problem but not another. You can have all of them. You can have 20/20 vision (acuity) but have eye behavior problems. VT can help with acuity and the need for glasses, or just help the eye behavior.

 

I first found out about eye behavior and vision therapy when trying to get help for my now 13 year old son for school and behavior issues. This was long before we had Lyme Disease and PANDAS on our radar at home. My son has been a mystery over the years, and now, because of my daughter's PANDAS dx, I'm wondering if PANDAS could be an issue for him too. His is a long complicated story, but in a nutshell: colicky baby, sensory sensitive, significant visual issues (more on that later), learning disabilities, executive function disorder/ADD symptoms, panic attacks, anxiety, OCD symptoms, bipolar like behavior, rages, and I've even suspected tics. On an IEP since 4th grade now in 8th). After a neuropsych exam showed a much different profile than the school had always thought, and he fit the general pattern and profile of Twice Exceptional (giften with Learning Disabilities) but without technically meeting the IQ criteria, I suspected visual problems.

 

He ended up having *significant* visual problems. He has Anisometropia, sometimes called Refractive Amblyopia. Basically he has normal vision in one eye and moderate farsightedness in the other eye. Because he was not correcting his vision with glasses, and had never done vision therapy, his strong eye was taking over seeing for the weak eye. He was losing vision in the weak eye and is still at risk for eventually losing the ability to see in the weak eye. The condition causes him to also have significant convergence insufficiency, accomodative dysfunction, and amblyopia. Glasses do not fix the problem, and in a way make it harder to see because his strong eye is less able to take over completely and because the difference in prescription between the 2 eyes makes it difficult for the eyes to work together. He has been resisting vision therapy or even wearing his glasses.

 

If anyone is interested, I could explain a little about the "eye hygiene" and vision therapy and how it helps, but this is already really long so I won't unless there is interest.

 

What do other parents think about the possibility of my son also having PANDAS? On the one hand he has a lot of symptoms, we have a family history (my daughter has PANDAS, my grandfather had Rheumatic Fever, another son had scarlet fever, lots of anxiety and OCD, etc), he may be a strep carrier, etc. On the other hand I can't pinpoint an exact sudden onset of symptoms like I can with my daughter. It's almost like he was born with it. I did have strep while pregnant. Have there ever been any studies on exposure to strep in utero triggering PANDAS in infancy?

[LNN]

Wow - thank you for this overview! Yes, I'd love to hear more about eye hygiene - haven't come across that term yet.

 

As for the possible Pandas, I think it's certainly possible. Since you also have lyme in the family, you should consider that as a trigger as well (not with a western blot from a regular lab - but that's an entirely different conversation). My son has both Pandas and lyme and they look very similar. The other thing I've found that also overlaps with Pandas/neuropsych behaviors is methylation. This is a type of "metabolism" that occurs in everyone. My daughter has a genetic issue that makes her look very Pandas/bipolar. Treating the methylation issue has made a world of difference. So I think you can absolutely be dealing with a medical cause of your son's symptoms, even if there isn't a direct strep link. And plenty of parents will tell you they never saw "sudden onset" even with classic Pandas histories.

 

As I introduced this thread - I sometimes feel like Queen of onion peeling. Don't want to derail this thread, so PM me if you want to discuss further or perhaps start a new thread to get lots of input on your son's situation.

[Iowadawn]

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

Edited October 6, 2012 by Iowadawn

[Ozimum]

At 12 (BP - Before PANDAS!) my DS was evaluated and found to have weakness in focus and eye alignment skills, and he had underdeveloped right left coordination. These things affect reading eye movements and decoding accuracy and he found it necessary to read slowly in order to process properly.

 

He did Vision Therapy in 6 week blocks when he was 12 and then again at 13 after a re-evaluation. The exercises helped...I did the homework exercises with him every night through the 6 weeks and could see how he developed. I found myself thinking that it must have something to do with brain plasticity. He thought VT helped him alot. I think it did too.

[Connie]

I have used CHOP AND GALLOWAYBoth my kids have vision issues but best in my opinion developmental ophthalmologist who takes medical insurance is Christopher Weidig in springhouse PA my children's eye issues fall under medical insurance. Imagine that -Cigna for ambliopia and I would agree vision therapy and patching works my children have improved a lot cheers! Most effective when tx is early and consistent. Connie

[Connie]

I have used CHOP AND GALLOWAYBoth my kids have vision issues but best in my opinion developmental ophthalmologist who takes medical insurance is Christopher Weidig in springhouse PA my children's eye issues fall under medical insurance. Imagine that -Cigna for ambliopia and I would agree vision therapy and patching works my children have improved a lot cheers! Most effective when tx is early and consistent. Connie

[philamom]

Thanks Connie for sharing. That doctor is right around the corner from me