The Pirate Years, Part II: Let the Trauma Begin!

What happens next, after your 3-year-old has cataract surgery, having, so far having lived more days with obscured vision than without?

She is unhappy, miserable really, in pain, and mostly unable to understand the what and the why of 12 eye drops a day, a plastic shield taped to her face, and a whole lot of medication. (For all of that, she could be as adorable as ever. Here's a little movie to prove it.) The eye drops were the worst--some were painful, some not, but the lesson is quickly learned, and within a few days it took two people to pin her down to get them in. As we weaned off them, we were able to start giving them to her while she was asleep, a tricky task which sometimes ended in nightmarish battles that we joked (but really feared) would give her a twitchy sleep complex later in her life. A year later, eye drops are still the worst possible punishment for her--a bout of pink eye, and the 3 times per day eye drop medication for it, revealed that she has not forgotten, may never forget, the trauma of the surgery and the month of physical recovery which followed.

After that month, though, the drops were over, the pain was gone, and the long term reality set in. The cataract removed and replaced with a plastic lens, Joey is left with, in effect, a case of amblyopia, commonly, "lazy eye." This condition can develop for a variety of reasons, but the ultimate result is that the neurological pathway between the eye and the brain has not developed fully, so that the brain "ignores" the signals that the eye sends. The physical effect of amblyopia is a wandering or "lazy" eye. The therapy for amplyopia dictates that you occlude the vision of the strong eye in order to force the brain to use only the signals it receives from the "lazy" eye. This involves "patch therapy," a seemingly primitive sort of medicine in which a patch is placed over the strong eye to block its vision. It sounds obvious and simple, and yet it is a most incredibly difficult thing to do.

Upon first patching Joey, we discovered that Joey's condition of amblyopia was more severe than the norm, an indication that her cataract had been present very early in life. So not only did her eye "wander," it did not have what they call "central fixation," which keeps the eye centered. With the guidance of her good eye, her amblyopic eye would stay in place; with her good eye patched, her amblyopic eye would do this:

Creepy, isn't it?

Okay. So a few things might bear explaining. The patches can be decorated, and one of Joey's favorite patch decorations are googly-eyes. Unfortunately distracting for this example, but it is the only good picture we have of her from this period. Putting that aside, one can see the other eye shooting off to the side. She is not trying to look off to the left--this is all her eye could do, for almost a month. When she wanted to look out of it, she would have to turn her entire head to the side to align her eye with what she wanted to see.

We had one more month of hand-wringing and waiting: in this period, the eye would either fix centrally, or it would not; if it did not in the short term, it most likely never would. One can only imagine the scrutiny, the hoping, the waiting. Time did its job, in this case, and though it still desperately wanders whenever she is fatigued, her eye did ultimately "fix" centrally.

Unlike other cases of amblyopia (as I understand them), Joey's is unique in that the vision in her impaired eye is so poor--20/300--that her brain quite simply wants very little to do with the signals it sends. (See a simulation of impaired vision here.) Even patched, Joey's brain will sometimes prefer to see the back of the patch rather than see what her impaired eye sees. She will sometimes say that she can't see anything, or that she can only see "black lines": light seeping through the patch onto her good eye. Simply put, there is no reward or punishment in a preschoolers little world that is enough to combat the discomfort, the limitation, and the frustration of not being able to see when, in all truth, and in her own mind, she knows that, in any given moment, she can. Not surprisingly, patching is an effective treatment for amblyopia, but compliance is the greatest barrier to its success.

A year has passed. Nothing has changed. Rather, a lot has changed: Joey is now four, and why no one speaks of the peculiar nightmare that is raising a four-year-old girl I do not know. Despite (or because of) intermittently successful patching, Joey has had no improvement in the vision in her eye. We tried dilation therapy for a short time, and alternative therapy in which the good eye is dilated with atropine--just like in the eye doctor's office--in order to minimize the contrast between being patched and not patched, thereby (in theory) decreasing the frustration with wearing the patch. (Dilation therapy can be used as an alternative to patching in patients whose vision is better than Joey's, but in our case dilation alone would do not good. As it turns out, dilation and patching also did no good.)

In a rare moment, Joey plays fairly successfully at a playground in her patch.

 

Joey is proving herself a fierce opponent to patching. Many who know the sweet, light child she can be would be horrified at the monster unleashed at "patch time." Parents always endure unspeakable assaults from their children, sometimes expected, sometimes not. When Joey threw her boot at my face to avoid being patched, I think something broke inside me, and while I continue to do my best with the therapy, I struggle with how much psychological pain I am willing to inflict (both on her and on me), and what lengths I am willing to go through to implement a therapy which has such an uncertain chance of succeeding.

Over time, the pathways between a child's brain and her eyes become less pliable, and the window of opportunity for change will close. Sadly, Joey's doctor is somewhat pessimistic about her ability to improve; in his experience, fierce battles against patching do not cause a lack of improvement necessarily, but rather seem to indicate (as he put it) some innate understanding that there is no improvement to be had. Maybe this is something that he says to parents who find patching too hard of a battle to fight, to make them feel better about losing that battle more days than not. I don't know. The only thing left to do is to feel horrible about the days when we lose that battle, feel like the days when we get a little are not good enough, and always try for more, against the possibility that even perfect compliance may bring us no change at all. What else is there to do?

Next Up:

The Pirate Years, Part III: Fashion Patches are (Not So) Fun, or, Five Dumb Things I've Done to Get My Daughter to Wear a Patch