Monday, March 16, 2009

The rest of the story.

Ok. So I think I'm ready to tell the rest of the story about Zaven's eye that I started in my last post. About why we didn't notice he was blind in one eye for so long, and about the screw-ups after the surgery.

The first part is actually pretty simple. We didn't notice he was blind in one eye because he didn't have symptoms. Not really. His only symptom was that he didn't like really bright sunny days. I don't either. I'm pretty sure that bright lights are used as a torture device. So who knew it was a symptom of cataracts. And who suspects cataracts in a five year old? The other symptoms (a cloudy white spot in the pupil, a wandering eye, failure to focus in one or both eyes, moving closer to see things, clumsiness, walking into things, needing strong lights to look at books)-- those symptoms just weren't there.

And remember how I said he'd failed some vision screenings but passed others. Well, after we realized he had a cataract I talked with him, trying to figure out how he'd passed those screenings. It took a while to get it across to him that he hadn't done something wrong by "failing" his eye test. And when he finally did understand, he was shocked to realize he was supposed to see out of both eyes. I mean he had NO idea that he was supposed to see out of his right eye. No idea that anyone sees out of their right eye. He kept holding his hand over my eye and testing me to make sure I wasn't lying about seeing out of both of my eyes. (With me almost crying the whole time.) Anyhow, it turns out that he thought vision screenings were memory tests. The nice nurse stands behind you and (being right-handed) she covers your right eye. Then you look at a chart and read it to her. No big deal. Then she covers your left eye. You can't see the chart, but she asks you to tell her what it says. So you repeat back everything you just memorized. If you do well, you get a sticker. This is what a vision screening is like for a half-blind five year old. No one ever thought to explain what the test was for. And 90% of nurses are going to cover the right eye first because they're right handed. It was only when we went to an eye doctor who projected the letters on the wall and switched screens around that we found that he had 20/200 vision in that eye. That means he could see the big E at the top of the chart. He had trouble making it out, though, and couldn't always do it.

So that is how we missed it.

And this is what we did wrong.

At first, we did everything right. We went to the best pediatric eye surgeon in the state and had cataract surgery. Basically, they took out the defective lens in his eye and replaced it with a plastic one. And because he was a kid, they put the lens in a position where he wouldn't naturally be able to focus. It sounds mean, but it makes sense. As he grows, his eye grows. But the plastic lens doesn't. So they put it in the wrong place, the eye grows and shifts around the lens and by the time he's an adult the lens is in the right place. In the mean time he wears glasses. And since plastic doesn't flex the same way a natural lens does, he wears bifocals. He will always have to have bifocals, but the part on top will have only a slight prescription once he's done growing if all goes well.

And after the surgery we also did everything right. We gave him three different types of prescription eye drops at various intervals and didn't even get the bottles and the times mixed up. We woke him up in the middle of the night to put the drops in even though they stung and he cried. And we kept the bandages on and the eye clean. And he healed. And his black eye went away and he looked fine. And we went back to the doctor and they tested his vision and he was some better. He could just make out the next line down on the chart. Sometimes. Not consistantly, though. So they told us to cover his good eye with a patch all day, every day, except when he's in school. The idea is that if his good eye is covered, he would have to use his bad eye and this would stimulate neural pathways and make his brain start to accept signals from the eye.

And this is where things started to go wrong. You see there are a lot of problems with what they told us to do. First off, there's the simple fact that if you cover his good eye he's still basically blind. So all day, every day, he's doing good to see the second line on an eye chart. He's supposed to play and read and walk around blind all day. And there's the fact that he HATED it. Not just the being blind all day, and the going out in public with people staring at you, but the way the patch itched, and the way that it peeled off his skin when it came off each night. Because even when you shift it around a bit and try not to put it on the exact same spot each day, it's still a band-aid being stuck on and then pulled off the same skin over and over. He would bleed from it. And the other problem, the bigger problem, is that this is NOT what you're supposed to do. It was the advice of the day, advice they'd given for decades. Advice they STILL give. But it turns out that it's bad advice. It doesn't help much. It helps some. But not much. So for six months we tortured our kid for basically no improvement. Because the next time we went back he was still only sometimes seeing the next to the top line on the chart. And at that point the doctors told us to quit patching because his eyesight was as good as it was going to get. His vision was estimated at 20/160 with the best he'd ever seen being 20/100.

Thankfully the story doesn't end here. My wonderful mother-in-law came to his rescue. She's a teacher. Retired now, but she taught college at the time. But she was, is, a damned inquisitive person. She likes to know stuff. She listens and puts little bits of (quite often useless) information in her brain. And she pulls them out almost at random. She's scatterbrained and disorganized. But she has a talent for tweaking on tidbits of knowledge and focusing an insane amount of energy on finding out everything there is to know about the detail that's got her attention. This is hell when you're trying to explain to her over the phone how to program a remote control, but it's amazingly useful at odd moments and this was one of those moments. She, like Scott and I, felt horribly guilty about not noticing that Zaven had a problem. She taught Early Childhood Education classes and helped her students learn how to recognize kids with problems like Zaven's. And she was also a State Hearing Officer for Kentucky. One of only 16 in the state at the time. For those of you who have no idea what that means, she was essentially a judge for education cases. And if you appealed her ruling, you appealed it to the Kentucky Supreme Court. She never had a ruling overturned. So here she was deciding how schools should handle handicapped kids, never noticing that her grandson was blind in one eye. But in doing all that work, she heard about alternative therapies for kids with vision problems. And she tracked down the information and talked us into trying it. We didn't want to. I don't know how to describe why we didn't want to. I think we were just tired of having hope. We'd put our kid through hell for months because we had hope, but nothing came of that. And when we had to face the fact that nothing came of it, it was hard to then turn around and say, "Let's try this next!" It was easier to just say, OK. He's not gonna see out of that eye.

But my mother in law is persistant, and feels free to use guilt as a means to an end. So we took him to see another specialist, this one a specialist in a field that our opthalmologist (the best pediatric opthalmologist in the state) had told us was equivalent to hocus pocus designed to scam desperate parents out of their money. And the new specialist told us to only patch him an hour or two a day, and not at all if his skin was tender because patching really didn't have much value if used more often than that and wasn't that important in the grand scheme of things. Not important enough to make him bleed. And he told us to patch him when he was playing video games with lots of action. He encouraged us to buy Zaven lots of video games. Video games are good for your kids eyes??? Yes, apparently they are. And we had to drive him in to their office (50 miles away) once a week for therapy. Therapy that involved playing even more specialized video games. And if he worked hard to play these games he could have his choice of full sized candy bar. Did I mention that Zaven liked this specialist much more than his other specialists?

And so we went back every week and after a year and a half they told us he was done. We should stop the therapy and stop the patching because his vision had improved as much as it ever would. He was seeing 20/40. That's what I see! Of course I can wear glasses to make mine 20/20, and his is 20/40 with glasses. But he'll be legal to drive. And even if he were to go blind in the other eye (not likely, but it could happen) he'd still see well enough to get around and lead a normal life. He was actually really bummed to have to stop therapy. He said their video games were way much better than what we have at home, and I never gave him candy bars for playing. That was a decade ago and his vision has remained at about that level ever since. He has a harder time seeing when he's tired, but on an average day you'd never notice. Did I mention how wonderful my mother-in-law is? I totally forgive her for all those times she tried to have me explain how to program a remote control over the phone.

And just so you know, he still doesn't like bright sunny days. Apparently you don't have to have a cataract to like it better in the shade.


Tara said...

Wow, that is quite a story, I am so glad it has a happy ending. Kudos to your MIL.

Oh and on another note, I don't blame him one bit for wanting to play the better video games. What a mean mom you are, not handing out candy bars for playing video games, lol.

Azaera said...

Wow. Thank you so much for sharing your/zaven's story. I still hold out hope that Skyler can see maybe just a little bit from one eye or the other..

Karen said...

I hope so, too. But I also know that the fact that you love him so fiercely means that he's going to have a good life even if he can't see.