eye crossing

Rough patch

Posted on by amberhj

This is a rather tedious post. But I can’t help it. Understanding Stella’s visual issues involves a level detail that hurts my head. I have to give each individual brain cell a pep talk before attempting to absorb anything.

Tomorrow, we will attend Stella’s first session of vision therapy. I am nervous, excited and hopeful. At the same time, I’m confused and scared, because I suspect Stella’s eyes are getting worse. She’s been taking off her glasses and rubbing her eyes a lot more lately. It’s harder and harder to get her to wear the patch (Magic Tape over her glasses’ right lens, so as to make her weaker left eye work harder and get stronger). I think her eyes crossed today while I was changing her diaper–and her glasses were on. Not good. I wonder if her prescription needs to go up. A very optimistic part of me that rarely sees the light of day (for good reason, probably) wonders if the prescription might need to go down, but that makes little to no sense. I wonder if patching is somehow making things worse, namely by weakening her strong eye. Something is OFF right now. I can just tell. I don’t feel so sure that we’re on the right track anymore. I thought I had this pretty much figured out, but not anymore. I’m terrible at dealing with uncertainty. But nothing is ever certain, is it? Sucks to be me.

The specifics about Stella’s vision issues are still annoyingly hazy to me, which I can barely stand. I’ve been trying to read studies but have a hard time making sense of them nevermind applying them to Stella’s unique visual situation (which again, I don’t fully understand, so how to know what research applies to her?). I’ve emailed her doctor, only to get brief, confusing replies that include attempts at reassurance without any real clarity. It’s frustrating as hell. There are conflicts between what different doctors have told us and I’ve never been able to fully reconcile it all. I have so many nagging questions–some are specific with answers that exist but are currently just out of reach, and some are broad and probably unanswerable:

If her good eye is being covered for three hours a day, could its vision be suffering? She’s been rubbing it.

If her weak eye is improving due to patching, shouldn’t her glasses prescription adjust sooner rather than months later at her foll0w-up appointment?

Since she is not wearing her glasses or patch as well and seems to be having more trouble with her eyes, do we need to schedule another exam?

How do her conditions of farsightedness, strabismus (accommodative esotropia in her case) and anisometropia (unequal refractive power) play off each other or cause each other? I want to understand the relationship between all these terms, and why her brain is tuning out one eye. I don’t quite get it.

Does Stella have full-on ambylopia or is she just headed toward it?

Why, after she started wearing specs, did Stella’s brain start to favor her strong eye if the glasses supposedly accounted for and corrected her vision in both eyes, with extra correction for the weak eye? Shouldn’t glasses have prevented this?

Why didn’t Seattle Children’s Hospital even mention vision therapy?

How did the ophthalmologist at Children’s Hospital know that her weaker eye was “starting to be tuned out by her brain”? All they had Stella do, in order to determine this, was look at giant gray cards with teeny, tiny holes in them. They did her strong eye first, several times with several cards, then her weak eye. What if by the end of this boring exercise, she just stopped paying attention, being not quite two years old at that time? They said there was a “one card difference” between her eyes. What on earth does this actually mean?

Does Stella have 3D vision or not (one office seemed to think so, another didn’t)?

If much of binocular vision is established by age two, though it can be corrected later, shouldn’t she have pretty good vision since her issues didn’t start until around 18 months and the crossing has been very rare (“intermittent”)?

Or, are her eyes crossing slightly all the time and I just don’t notice it? Current doctor says yes, her eyes probably are crossing and I just don’t notice. This made me sad and almost drove me insane. I didn’t think this was true, based on what the doctor at Seattle Children’s told me.

Relatedly, why the F is she wearing glasses if they’re not preventing crossing and her weak eye is getting worse anyway?

What exactly will vision therapy fix?

Are my hopes too high (for vision therapy)? They are very, very high. I can’t help it. (For those that have been following Stella’s journey for a while now: Vision therapy is the new Graz.)

Are my worries too big (again)? They are growing all the time.

It just never ends, does it?

Because we just can’t get enough therapy.

Posted on by amberhj

It’s official. Today, I scheduled Stella for weekly, ongoing vision therapy. I feel victorious! As in, “We’re going to the Super Bowl, baby!” (I probably need to get out more.) You see, our second opinion (the first being Seattle Children’s Hospital, where vision therapy was never mentioned, and the third being our current doctor) told us that Stella was far too young to do vision therapy. (How many times can I say “vision therapy?” Let’s see, shall we?*) Also, as I’ve said a million times lately, I just finished reading Fixing My Gaze, and it got me so pumped up about vision therapy that I felt physically uncomfortable with the knowledge that we weren’t pursuing vision therapy. And not only has Stella been taking off her glasses more, she’s been staring into space and rubbing her eyes frequently, too, as she did before getting glasses. Now I’ll have someone to gauge Stella’s vision regularly, someone I can grill in person and upon whom I can dump all my concerns on a weekly basis. Hooray for vision therapy!

So every Wednesday morning, we’ll be headed out for some mindblowingly fun “eye games” (aka “vision therapy”). That’s my brilliant branding for this new adventure. Wearing an eye patch is currently called, “the eye patch game.” I know, I know. My advertising background is coming through in its full luminescence here, I’m a genius and I put Don Draper to shame. Yes, yes and yes.

Upon confirming our slot, the vision therapy office emailed me a preparatory doc entitled, “VISION THERAPY: What you need to know.” Highlights include:

  • Vision therapy programs are individualized. “Each session consists of 45 minutes of one on one care combined with a program of daily home oriented therapy.”
  • We will be given “vision therapy handouts and supplies for home therapy use that will change periodically.”
  • “The majority of patients in a once a week program are in vision therapy for nine months to one year.”
  • Progress evaluations must be scheduled every three months regardless of the number of vision therapy sessions that have taken place during that time.

I am totally bringing chocolate chips, maybe even a baker’s dozen from Trophy Cupcakes, to each session. Whatever it takes to reward and encourage cooperation! Stella is 24 months old and is going to be asked to “focus” (in one way or another) for 45 minutes straight. I know she can do it. I’ve seen her concentrate intensely on an enormous ice cream cone for at least that long. I know we can make it work and I know this doctor knows what she’s doing and is fully aware that Stella just turned two. I know I know I know. But (shockingly) I’m a little nervous. Kind of like that time I bitched endlessly and fought like hell to get a promotion, then when it was finally handed to me, I freaked out and realized I didn’t know what the hell I was doing. “Idiots! What were they thinking giving me all these new responsibilities! I’m not ready for this! Oh wait…”

But seriously, it’s all coming together. Another bit of encouragement emerged on Monday evening at our PEPS (Program for Early Parent Support) gathering. (PEPS is just a bunch of parents-to-be that get tossed into a group that starts meeting weekly once the babies are born, within a month or so of each other. Basically, for new parents, it’s a way of feeling less insane.) Turns out one of the mothers in our PEPS group had double vision as a child, mainly when tired–fatigue is also what triggers Stella’s eye crossing. She admitted that in an attempt to see clearly, she wound up walking around with one eye closed. Her mother got used to seeing this, and like most young kids she was very good at compensating for the vision problem. As a result, she said her mom pretty much let it go until a friend called her out on it. She was told to wear a patch, but her parents opted for vision therapy instead! My kind of people! She did vision therapy for a year at around age six and that did the proverbial (literal?) trick–it’s just amazing to me. She’s had control of her eyes, and no double vision, since. Her recollection is that the sessions were fun, with engaging activities, but that she felt very tired afterward. And, because apparently she can read minds and intuited my concern about Stella’s age, she mentioned that while she was school age during her vision therapy, kids of all ages could found in the waiting room. (Thank you, PEPS pal.)

This sort of discovery keeps happening! Stella’s glasses and patch have been the gateway to all kinds of stories about patching and eye crossing and visual whatnot from just about everyone we know, and even some we don’t. It’s news to us but apparently everyone has a sibling or close relative who faced the same type of vision issues in childhood. I should’ve known! In Fixing My Gaze, neurobiologist extraordinaire Susan Barry points out that about one in 25 children has strabismus or a binocular vision problem. That’s roughly one in every classroom. It’s become clear that Stella is in good company, and it all feels so normal now. Which blows my mind. Normal and I aren’t close but I’ve always wanted to get to know him. Some say he’s boring but I find him absolutely fascinating!

One other bit of insight I took away from that vision therapy handout: This shit is going to be expensive. Did I mention I’m looking for freelance writing gigs? Go ahead and picture me, out on the internet highway, holding a shabby virtual sign that reads, “WILL WRITE FOR VISION THERAPY.” See? Completely normal.

P.S. Found this at covd.org, a “World Health News Today” segment on vision therapy for children.

* Tally: 19 “vision therapy” mentions. 20 if you count that one. I can totally do better. Vision therapy! 21.