Fear not, this story has a happy ending.
My patient was a 5 year old boy. He was referred by a pediatrician who had been treating him for several years for a genetic disorder that was thought to be the basis for his developmental delays and challenges. Then, about 2 months ago, he was examined by an Eye Care Provider who shall remain Anonymous (AECP), and was diagnosed with severe amblyopia of the right eye. The pediatrician as well as his parents were concerned about his vision and how it might be hindering his ability to learn. They were also wondering if a complete neuropsychological evaluation was indicated.
As soon as I saw this child in the waiting room, my blood began to boil….. because he was wearing a patch.
Mom provided me with a copy of the exam notes from that first eye exam. The chart contained very little information, but I was able to figure out that the AECP had prescribed glasses to be worn full-time. And then, at the bottom of the chart, there it was. Patch the left eye for 9 hours per day.
I cannot describe the emotional turmoil I felt when I saw that; certainly anger and disappointment but so much empathy and sadness when I thought about what this child and his family had endured for the last 2 months.
As soon as he started wearing the patch to school, his behaviors and performance started to regress. His parents had been investing significant resources in providing him with appropriate services and he was making great progress…. until the patch went on for 9 hours per day. I asked mom if she had discussed this with the AECP. She had. He had warned her that this was likely to happen and he might even have to repeat kindergarten but if she didn’t patch him for 9 hours per day he was going to lose his vision.
I told my young patient that we were going to do 1 thing (measure the visual acuity of the amblyopic eye) and then we were taking the patch off!! He was able to read the 20/30 line. Wow. I can’t remember the last time I felt like crying with happiness when one of my patients read the 20/30 line. I have no idea how much his visual acuity had improved because nowhere on the chart from the AECP was a best corrected visual acuity recorded.
Now, certainly amblyopia is far more than reduced visual acuity, and my young patient had difficulty with many visual skills. I was expecting to find significantly reduced binocular vision skills. After all, how can your brain learn to fuse the images from each eye if you are denied that opportunity for all your waking hours! I was elated when I merely found deficient binocular skills but at least he was binocular. There was no strabismus (eye turn).
As we moved into other parts of the examination, something wonderful happened. My young patient started smiling and trying to perform the various tasks we put before him.
Mom and I had a long talk. I tried my best not to cut the AECP to shreds. We did discuss evidence from the Amblyopia Treatment Studies and how 2 hours of patching with activities provides the same outcome as 9 hours of patching if given an appropriate time frame. Then we discussed the options for her son moving forward, keeping in mind that he is far more than a child with amblyopia.
We decided not to start a vision therapy program at this time. I want to give him some time to get back to where he was before somebody decided he needed to go to school wearing a patch. So I did recommend patching for 1-2 hours/day with some activities. I made it very clear that he is NEVER to leave the house with a patch on. In a few months we will re-evaluate and decide on next steps. We also decided that the neuropsychological evaluation can wait too.
I think it is only fair to point out that I am walking a line between 2 different perspectives here. First there is the scientific perspective. Clinical trials and evidence- based medicine helped me determine the best treatment for this young child. We are on the cusp of a new understanding of amblyopia treatment that is likely to limit or eliminate the need for patching in many cases. The second perspective is my personal belief that sending a child to school while wearing a patch is a horrible thing to do to that child.
I have a cousin who is 2 weeks younger than me. She has an accommodative esotropia and amblyopia. She wore a patch full-time for a few years. Her parents had photographs of their 3 beautiful children hanging on the living room wall. She was wearing a patch in her photo. I remember visiting her and staring at that photograph and trying to figure out what it meant. Now, when I see that photo hanging on the wall in my memory, all I can think about is how awful it must have been for her.