a blog about raising a daughter with cerebral palsy and learning unexpected lessons along the way

Wednesday, March 24, 2010

Vision Update: Amblyopia

It's been roughly 2 months since Oia's strabismus surgery. Yesterday was another follow-up appointment with her ophthalmologist.

Things seem to be going along as well as they can. Eyes are straight meaning strabismus is corrected, Dr. P is pleased, we are pleased, and Oia seems pleased. But, how well can she see? No one knows.

What we do know is that unfortunately, Oia suffers from Amblyopia and we are still taking an aggressive approach to better this. Amblyopia is one of the most common vision disorders in children. It's responsible for more vision loss in children than all other causes combined. Amblyopia may be defined as a reduction in visual acuity without any structural abnormality of the eye itself, resulting from abnormal visual input early in ones life. Simply put, Oia's right eye is 'healthy' but the communication pattern between her eye and brain is faulty and/or interrupted so her vision is compromised (thank you again to that little hole her sweet baby brain).

What to do now? Just continue patching. That's all we can do. That's what we have been doing for the last year now; patching via Atropine drops. Atropine dilates the eye and a dilated eye as you may know is a blurred eye. This is the only alternative to Oia actually wearing a patch over her eye (she pulls a patch off faster than I can put one on) but it's not as effective. Drops, however, are not the best solution this time of year. Being outdoors with a dilated eye is not at all enjoyable to Oia to say the least. Understandably so. She lowers her head as her eyes are extremely sensitive to sunlight, she becomes even more unsteady on her feet, falls much more, and she is most fussy or clingy on the days that I have to put a drop in her eye. I hate it for her. Hate it. So, Dr. P gave us two options: 1. try again making Oia wear a patch on her eye for just 2 hours a day every day or 2. continue using Atropine, 1 drop every 3 days. The plan is that she will allow me to cover her eye with a patch but I have a strong feeling that many, many more of those nasty drops are in our future. (sigh)

I asked Dr. P how long we have to patch her eye and he said until she is of age to actively participate in an eye exam...4, 5, maybe even 6 years old. That's a long darn time.

Amblyopia is vision loss and when it's gone, it's gone for good. It's serious. Corrective lenses do not improve this. Patching is our only hope to saving what sight she does have left in her right eye so we will battle the beast and continue patching any way we can...even if it is with drops.

Oia in her "Hollywood's", which she also refuses to wear.


  1. Aww, Mo! I hate it, too! After many months of good patching, for the last two Faith has been back to pulling them off, again. So frustrating and expensive! LOL! Do you feel like you are boxed in a corner? I sure do, sometimes with this concern. Will keep my fingers crossed for Oia and for you!

  2. Good luck with the patching. I asked our doctor about the drops, but she said that they would last too long for what she wants Gracie patched for. So, we have to buy the patches and then try to come up with something that will keep her interest away from the patch. Yeah right. It is so frustrating!

  3. It might depend on what type of eye exam they want to do and how old she is. I was able to be tested for things like color blindness at a younger age than field vision loss. I was probably 10 or 12 when we found out I had feild vision loss (I can't see straight down unless I'm actually looking down). So try and stay positive. Things will come along when they're meant to. None of this is a sprint it's a marathon.

    PS. I hope you got my email yesterday....

  4. Hey, I've been following your sweet blog for a while now. :) I myself have Amblyopia. I'm nearly 20 now, and mine was caught early just like Oia's (by the way, her name is darling) and I wore a patch for quite a while when I was little. My mom said that making it a game helped me be more cooperative about keeping it on, because I didn't like it. At all. Good luck! :)

  5. Charlie won't wear sunglasses either. I can't imagine the issues you would have with a patch. Maybe if you guys had a special shopping trip to buy a pair of "princess" glasses or whatever she's into?

  6. It's frustrating not knowing what our kids can see, isn't it? It drives me crazy!
    We're so lucky we don't have to deal with patching or drops! At least for now. :)

  7. I love her Hollywood's. She looks like someone straight out of a fashion mag.... so posh!