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Vision Therapy

posted Thursday May 20th, 2010

Vision therapy.

Now, that’s something I think all new parents — particularly parents of kids with Down syndrome — could use. A little coaching through the process of envisioning the future, jumping ahead, fretting over something that might (or might not) happen years or decades from now.

But that’s not what I’m talking about here.

Last October, Sophie passed her vision test with relatively flying colors. (What are flying colors, anyway?) She’s a little far sighted and has an astigmatism, just like me (well, not exactly like me, I was wearing glasses at 4, she doesn’t have them — yet) but no serious problems, the doctor reported. We do have the clogged tear duct issue, but that’s a separate thing.

Clearly separate from what happened just a couple weeks after Sophie passed that vision test in October. Her physical therapist asked, “Do you notice Sophie cocking her head to one side when she reads, or focuses on something?”

Come to think of it, yes. It started after that appointment, though, so I hadn’t asked the doctor about it. The PT talked about referring Sophie to a developmental eye doctor or therapist. Then Sophie’s occupational therapist brought it up. She was even more concerned — talked about Sophie “lacking vision” in certain places.

Crap. Somehow (and here’s where I need my own form of vision therapy) my mind raced ahead to surgery, which no one had mentioned but still, I figured, was inevitable. So I did what I do best: I put my blinders on.

This went on for months. The PT and the OT were insistent, so I finally made an appointment with the opthamologist. Again. Good timing; the school nurse left a message the day before the appointment, expressing her concern about the cock-eyed thing.

OK, OK, we’ll take care of it. Well, maybe. Why can’t anything be simple? Turns out, the therapists want Sophie to have “vision therapy.” And, it turns out, vision therapy is quite controversial — I know parents who have been through it with their kids, and were disgusted by the expense and lack of results. Yet I have incredible faith in our PT and OT. And Sophie IS cock-eyed. You’ve probably noticed it in recent pictures, the way her eyes wander up and to the side.

The appointment was yesterday. Ray insisted on taking her, which was nice, since I’m having a particularly bad week at work. Before they left yesterday morning, I repeated the concerns several times.

“I’ve never seen her do that,” Ray said.

Seriously? And it’s not like he doesn’t read with her and play with her. In the end, the appointment wound up being two seconds of cock-eyed vision therapy (“We don’t believe in vision therapy,” the doctor told him) and an hour of removing the tubes from Sophie’s eyes — placed there years ago, to try to unblock her blocked tear ducts.

She still doesn’t need glasses, Ray reported. They gave her a thorough vision test. The doctor pooh-poohed the cock-eyed thing entirely. To be fair to the doctor, Ray didn’t push the issue.

“Did you have her read a book for the doctor?” I asked.

No, he said, because he had Sophie read a book for him before the appointment and she didn’t cock her head a bit.

“I think you’re too focused on this,” he said.

Maybe. And the therapists think I’m not focused enough. Why do I constantly find myself in this position – right in the middle, failing on both sides? Tomorrow is Sophie’s birthday. I desperately need to be at work. But how can I not be there to pick her up at 1:30 from school? It’s her BIRTHDAY. Then again, the most insistent therapists will be seeing her at the house tomorrow after school; she’ll be horrified that nothing happened at that appointment. Maybe I should hide at work.  

So now what? Seriously, folks, I’m putting this one out here with the hope that as always, you’ll share your sage advice. Not about whether or not I should go to work tomorrow, of course. What do you think about vision therapy?

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Tags: Filed under: Down syndrome, health, the future by Amysilverman

8 Responses to “Vision Therapy”

  1. Is it like patching and exercises?

    I think it really depends on what her specific issue is. For Leo, who had a lazy eye, our doctor said surgery was the only option (not trying to scare you since this is not Sophie’s issue). But our dr said point blank that many people try to do “exercises” for what Leo had and they don’t work and they end up needing surgery.

    Do you think Sophie would cooperate with “vision therapy”? (Cause my big thing is I KNEW Leo would not flipping do any exercises-course he was 3 1/2 at the time). I will also say that as terrifying as the prospect of eye surgery was, it was not a big deal at all and I am so glad we went through with it. If you can do open heart surgery, you can do eye surgery (but of course hoping you don’t have to, I just don’t want you to freak out about it and certainly don’t freak out yet!

    I would get a second opinion. I will also say that I have found that therapists and doctors almost routinely NEVER agree. In fact they seem flat out spiteful of each other! I had an almost fight go on between Leo’s PT and his orthotist (is that the right term?). The PT was convinced Leo’s orthotics did not fit while the dr who fit them pronounced them “perfect.”

    That’s my round about way of second opinion. What does your mom gut tell you?
    And also, totally blow off work tomorrow.
    But you knew that.

  2. Eye doctors who don’t believe in vision therapy / orthoptics have chosen to ignore published research about something that has little benefit to their own practice style and income.

    One of the most famous eye muscle specialists, Von Noorden, understood the value of therapy and. surgery; he practiced both:

    Vision therapy and eye muscle surgery can be appropriate and effective in those cases in which it is appropriate. The health care consumer’s task is to find a scientific doctor whose mind is not closed and who can first render the correct diagnosis. You will not get the correct diagnosis from a doctor who does not know when orthoptics is more appropriate than surgery, i.e. one who is so callous as to say he does not believe in it.

    Granted, there are come charlatans who have given vision therapy a bad name; even then, why knock it when it has provided relief for folks? Heck, I don’t “believe in” acupuncture because I cant’ explain it. Or aroma therapy, for that matter. So what, if it works for someone else?

  3. From the high medical mucketymucks of strabismus:
    “Orthoptic eye exercises as prescribed by pediatric ophthalmologists, orthoptists, and optometrists can be beneficial in the treatment of symptomatic convergence insufficiency.”

  4. archer had eye surgery when he was just over a year old because of an inward-turning eye (after patching for a few months prior didn’t really help).

    The in-turn has since returned to a lesser degree — which we were told could happen — and our ophthalmologist recommended patching again, which we’ve now done for four months with some success, though there are still days when his eyeballs are skewed (esp. if tired and/or growing) and go back to the eye doctor again next week.

    I’m kind of expecting that surgery will be a topic of discussion, but I go directly to the worst case scenario usually, so we’ll see.

    not that this sounds like what’s going on with sophie, but if patching counts as “therapy” then I guess it’s an option. my wife and I did some (very little) research on “vision therapy” and thought it sounded like a bit of a crock. Our pediatrician, who is as open-minded to alternative therapies as we can expect from a western-trained doc kind of rolled her eyes when we asked her about that.

    I’m with maya, though, on getting my kid to sit still for an actual therapy session. when we patch, we have to put “wings” on archer so he doesn’t yank the patch off…

    also in agreement about eye surgery not being too big a deal, though any time they wheel your kid away from you in a hospital, i think your heart’s required to stop for a bit.

  5. Read my accomodative esotropia post -( ‎). My Opthamologist observed that Kayli was crossing one eye as she tried to focus on far objects, it’s related to binocular vision. Anyway- look up esotropia and you will get lots of info about eyes. It is different than strabismus (crossed eyes) and it’s not lazy eye. In addition, searching for esotropia I found lots of info on vision therapy. I’ll try to find my articles and email them to you! Robert is correct about the research and jonashpdx is also correct about Dr’s responses and the disputing info about it. Our Dr gave kayli glasses designed to help her use her eye properly, a kind of eye training process and suggested that she may need them for a couple of years. Don’t feel badly- I too tend to feel reactive but be slow to actually behaviorally react – it’s so hard to know what the right thing is to do. Based on what I read, it is important to be very clear about which condition it might be (if any) because surgery is NOT called for or helpful for some of it! Sorry I couldn’t do more….

  6. Oops- I don’t have your email so here is the link!

  7. thank you! and thank you to everyone for the advice!

  8. Hey! I ended up here via Miss B’s page on Facebook. I’m glad Sophie had such a nice birthday. I just wanted to mention that Carter goes to an pediatric optometrist who does vision therapy. I have his vision checked because I had glasses at 5. He hasn’t done therapy, but I love her. She’s very pragmatic and does not seem to overreact. She’s Dr. Cheng:

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