The Pirate Years, Part V: The Trials of a Clinical Trial

As I explained in Part IV, Joey was accepted into a clinical trial at UC Berkeley's LEVI lab in October, 2013, which is examining the effectiveness of 3D video game play as a therapy for amblyopia.

For the last two months, Joey has followed an hour-long regimen, five days a week: play 3D video games while wearing special glasses which blur the good eye such that it is slightly worse than the impaired eye. This forces the two eyes to work together (unlike patching, which works the amblyopic eye independently), creates dominance in the "bad" eye, and, so the theory goes, improves the functioning of the amblyopic eye in a manner truer to actual vision (using both eyes) than patching, and, as prior research has shown, more quickly, too.

The Trials of the Trial
It is quite possible that the most challenging part of this trial is the logistics--getting to the lab, parking, walking in; getting back home in time to pick up Joey's brother from school; in general, making up for the three hours a day, five days a week we lose in homework time, errands, and work time for me. We have found some rhythms: Joey delights in her ever-changing lunch selections, which are both practical in their car-ride friendliness, and necessary, in that there is no other time for her to eat except on the journey. She is keen on watching road signs and looking for parking spots; she has learned the way from the streets around Bancroft through the paths and buildings on campus to the Optometry Center. In terms of simple adaptation to the routine, I think she has fared better than I have.

In the lab, Joey has charmed the grad students who attend her, and she enjoys barking orders at her gaming buddies and insisting on their aid. Being asked to perform successfully in visual tasks while nearly blind, however, creates plenty of opportunity for frustration; some days our sessions are challenging for her, frustrating for me, and truly the worst part of our day. On occasion, they end in dramatic chair slumping and interesting hairdos brought on by repeated removal of the strapped-on glasses.

While gaming makes for far more pleasant therapy than patching, Joey's natural instinct to see at all costs has presented some challenges. The special glasses she wears, though the smallest possible size, are too large for her head, and the 3D glasses, adult-sized, must rest upon them as well. The precarious balance creates only a small window through which her blurred vision and the 3D glasses are effective together. It also creates a number of "cracks" through which she can peek. She tries her best, but the best intentions of a five-year-old last only a minute or so, and we've been faced with the challenge of how to keep her looking through the proper port hole. So far, Post-Its have been surprisingly effective. She hates them, but they get the job done.

The 40-hour Review
Today we went in for our 40-hour review. The news is remarkable. Joey has made a 15-20% improvement in her vision. On a standard eye chart, it is the equivalent of a whole line, plus some. In other terms:

• Her starting vision for being able to read one whole line was 20/500. She is now seeing 20/320, better than she ever has before.
• When focused on a single letter (with other letters blocked out), she has moved from 20/300 to 20/240.
• In relative terms, this is the equivalent of 120 hours of effective patching.

We are a bit stunned. Even as we started the trial, there was skepticism about whether she had the capacity to improve at all, and here we are with a whole line improvement. (She did have some success with even smaller letters, notably a fairly small "E" which, because of its contrast, is often very hard to discern. These gains were not consistent across entire lines, and so can't be considered firm progress, but they point to the possibility of even greater gains.) Giving that we had not a single indication of improvement during the two years we attempted patching, this is amazing.

The Next Step
And so we press on. The lab wants 20 more hours in-lab, and then another re-test; at that time, if she improves further, we can look into getting the (readily-available) equipment at home, allowing her to continue the therapy without our having to make the trek to campus five days a week. This is good news piled on a healthy portion of great news.

As this year comes to a close, I am, quite simply, grateful to science, and the wonderful people who dedicate themselves to its advancement. Thanks, too, to all of the folks who have kept up with Joey's story over the years, and who have lent your support on the varied, challenging legs of this journey. From friends making designer patches to strangers offering left-over supplies, I have been moved by many kindnesses, and by the reach that a story like this can have. I look forward to updating this blog--perhaps even with more good news--in the coming year.