The Pirate Years, Part IV: A New Vision of Amblyopia

I am happy to get a moment to give an update on Joey's condition and on her progress. Today was a big day, and I am a bit overwhelmed...and nauseous. But I'll get to that in a minute.

For the last few months there hasn't been much to say. Summer activities and a bizarre severe viral infection made patching impractical. Joey's doctor determined that patching probably wouldn't help her; this also left us with little energy for the project.

Last the spring, her doctor pointed us to a recent study that showed some promising results, and took place right in our back yard. The therapy involved video game play during patching therapy, and the results were impressive. The study produced significant improvement even for adult amblyopia patients (whom medical wisdom deems too old for effective treatment). In this particular study, some patients showed an amazing 50% improvement in vision after 40 hours of therapy, sometimes even less.

The research was headed up by Dr. Roger Li of UC Berkeley, Bret's alma mater, my summer employer, just a half hour's drive away. After a few months of information exchanges, we were able to get Joey in for an evaluation to participate in their current clinical trial.

Joey at the initial evaluation.

The evaluation itself was somewhat grueling; though youth is on her side developmentally, Joey would probably be better able to handle the tasks if she were just a bit older. She worked for 45 minutes at "What letter do you see?", patched and unpatched. This, for a child who has just recently gotten a firm handle on all the letters even when she can see them, definitely stretched her capacity. She did qualify for the study, however. Now the fun begins.

Today was her trial therapy session. For the first 15 minutes, we played a 3D game together on a PS3. This is somewhat unfortunate, as Bret and Colin are the real gamers in the family; Joey loves to watch and understands game play very well, but has undeveloped controller skills. Gaming left me behind with the introduction of 3D navigation (which was, when? 1996?). I've spent countless hours stuck against walls ever since. And yet I am her guide, poor thing.

So we played for 15 minutes with glasses on and no patch, then took a 15 minute break. The graduate students delighted her with Legos and candy. Then the hard work began; we played the game with a patch, regular glasses, and 3D glasses....It was a lot of weight for her little ears to bear, and significantly more taxing on her eyes. I played more this time, just keeping the game play going so she would keep watching and helping. She claimed she couldn't see anything, but would then tell me to "go pull the handle" and explained that "the meter will refill itself," so we knew she was seeing a little better than she was letting on.

She left the session unfazed and pleased with her pack of Smarties; I left ready to vomit. We rushed from campus back to the car, back home, just in time to get Colin from school. This will be our routine for the next 4 weeks, for 20 sessions. If she shows progress, we keep going.

The logistics will be challenging, and I'm sure that the travel will begin to wear on us after a while, pinching our time to get other things done. We are lucky to have this alternative to explore, however, and I am happy to be a part of research that brings amblyopia therapy out of the dark ages. Even if the end result is that Joey personally experiences no improvement, this is just one of those things we would regret not doing.

In a few days we return to meet Dr. Li personally. The grad students working with us admitted that her case is severe; they placed her vision back at 20/400, with mild astigmatism to boot. (Really, isn't being mostly blind enough?) It will be interesting to hear what Dr. Li has to say.

For the next few weeks, I guess we have a lot of gaming to do.