I decided to call the eye doctor to see if this was something of concern or not. The nurse I spoke to asked me all sorts of questions, including if I had noticed anything about her pupils. The response to everything was no, so we scheduled an appointment for Monday afternoon to have the doctor just check it out. Because, you know, we hadn't been to the doctor in almost three weeks and I was feeling lonely.
Sunday afternoon we picked up my mom from the airport and I sat in the backseat next to Bug, with nothing to do other than stare at her frighteningly beautiful face. Did I see it? No. Emily, you're making it up! Her left pupil is totally NOT bigger than her right one. But maybe it is? IS IT? Crap, don't say anything. DO NOT SAY ANYTHING IN FRONT OF YOUR MOTHER. KEEP IT TO YOURSELF.
So I kept it to myself for twenty painstaking minutes. And the second that Matt got back in the car after helping her inside with her bags I couldn't help it. "Umm, I think her one pupil is bigger."
"What does that mean?"
"I don't know. I DON'T KNOW. But I'm kind of freaking out right now."
"Why are you freaking out?"
"Because it can mean really REALLY bad things when one pupil dilates." My medical training is pretty much limited to crap from the Internet and the things we've learned that Bug does not have in the last ten months, but still.
"Like what kind of bad things?"
"I don't know. Like an aneurysm? Or like a brain tumor? I DON'T KNOW. OK, so it's not like her pupil is totally dilated. It's just, like, slightly bigger. Who knows! I don't know. Maybe it's normal that one is slightly bigger than the other?" I tend to babble when I'm nervous. Actually, this is pretty much how my brain works all the time. It's more that I tend to verbalize it when I'm nervous.
"Do you want me to pull over?"
"No, I'm fine. She's fine. Let's just go home."
"Well what do you want to do?"
"I was thinking of calling the doctor."
"What, so they can send us to the ER? They always send us to the ER." He may have had a point, but I was offended. And conflicted. They send us to the ER because they are concerned. Right?
"Isn't it better to be safe than sorry?" I asked him, and myself.
"Of course it is."
The thought of putting her through the ER (again?) if it wasn't necessary was not pleasant. And the thought of paying yet ANOTHER medical bill made me a bit barfy. Do you think Children's hospital would take a kidney? I've got two of 'em. I just don't have any more cash.
And how concerned was I? I looked at her again. At some points it seemed more obvious than others. My mind raced with the possibility that something else was wrong. And I wrestled with feeling like a horrible mother because I wasn't immediately calling the doctor.
We got home and Matt got a closer look. He said it might look 'slightly bigger' but nothing huge. I decided that she was acting completely normal otherwise, so I was going to let it go.
I did not google anything on the Internet.
Monday afternoon arrived and we went to her appointment. She slept in the car on the way there so her eyes were doing a good job. The same nice guy did the initial exam (can anyone tell me who these people are? Is he a nurse? Is he also a doctor? I suppose I could ask but I never think to when I'm there). This time Matt held her on his lap so I could see her face while he was having her look all around. The light up toy from Disneyland was another instant success except... she wouldn't look upward. He would hold her forehead in place and lift the toy up and she would arch her back and try and lift her chin to see it. It took every cell in my body not to immediately blurt out, "WHAT DOES THAT MEAN??"
He continued with the exam and she continued to be a flirt. If we can say anything it's that she is an absolute ham at all times, grinning at him, laughing, waving. It was time for the boards and I wanted to ask Matt out loud, "see, don't you want to help her?!" But then I realized that I would give away my rabid desire to help her cheat when I've been sitting with her. So I didn't.
Then it was time for the doctor to see us. She said that (we'll call him Joe, which might actually be his name, although I don't remember) did get her to look up, albeit briefly. She didn't seem overly concerned about the eyelid. There is apparently something called tosis which is a drooping of the eyelid, and which can sometimes indicate damage in the lower mid part of the back of the brain (barf barf barf) but she didn't think that's what was going on. She said that sometimes pupils can be a bit asymmetrical and then looked at me for less than 10 seconds and told me that mine are, too. Damn DNA.
Then she said that she didn't think that Bug had a null point at the top of her eyes any more. This stopped me cold. What do you mean, I asked her. She said that when she can get Bug's eyes upward, there is no dampening of the nystagmus.
My stomach twisted. How do you explain, then, why she's been doing that positioning for most of her life? I thought we had decided she did have two null points?
"Perhaps it's just the natural release position when she's grown tired of holding her head upward," she said. But this made no sense to me at all. Why, then, immediately after waking does Bug roll her eyes upward? I think we can safely assume that her neck is not tired at that point?
I was distressed. I'm 100% positive the doctor could tell because a) I do a really shitty job of masking any of my emotions and b) probably because of a, she has written that the "mother seemed upset" more than once in the notes we've been copied on. AWESOME.
It was like everything we had been going off of had been turned upside down. Now I was back to thinking that something else really might be wrong with her if the eyes upward was not another null point as we had thought. Pediatric specialists should really have barf bags available in each exam room.
We went back to talking about the eyelids and the doctor asked if we noticed it when she was eating. I said that she does make a super goofy face when she's feeding herself -- she will often roll her eyes up when she shoves things in her mouth. We of course did not have any puffs with us, but we did have a jar of step 3 baby food and an incredibly hungry baby. I grabbed a carrot out of the jar and put it in my hand and Bug attempted to eat it. The pieces in that baby food will literally disintegrate the second you touch them, so she was having difficulty. We finally managed to get her to get one in and make the face -- and luckily, the doctor wasn't overly concerned.
And then Bug's switch flipped, and she rolled her eyes upward as she ate. The doctor was intrigued. Adding to the list of things you do not want (being the first kid on rounds in the hospital, etc) is an intrigued doctor who immediately leans forward and grabs any sort of magnifying device.
AAAAH TELL ME TELL ME TELL ME.
"Now she does have a null point at the top," she says. Am I in the Twilight Zone? Does she or doesn't she?
I could make this slightly interesting dialogue but I have run out of energy. Essentially Bug has "periodic alternating nystagmus." I wish we could get bonus checks every time we run into yet another rare clinical presentation.
What this means is that she does have two null points, and they switch. She does not have them at the same time. Sometimes it's lower (when she looks down her nose, and when we think she looks 'normal'), and then her eyes have a downbeat pattern. Sometimes it's upper (when she looks up) and then her eyes have an upbeat pattern.
And according to the doctor, it's not that she adopts the upper position only when she's tired. She may actually be hard wired physiologically to switch after a certain amount of time in one position. She asked us to keep a log of when we see her eyes go from one position to the other, and that she wouldn't be surprised if we saw a pattern emerge.
And it might be that the fact that she looks tired when she rolls upward is something with her musculature -- the dark circles, etc. I don't know how I feel about that. I want to say it might explain why there are times where she does not nap whatsoever even though we think she 'looks tired.' But it makes me feel horrible because of how often we say things to each other like, 'her eyes are a mess! Go put her in bed!'
And I also feel horrible even typing the "her eyes are a mess" line, even though I say it all the time. I don't know how to get over my feeling that when she rolls her eyes upward, something is wrong with her or her eyes. It is becoming increasingly clear that a majority of the time it's just how it is! I need a support group.
This alternating pattern poses a lot of complication for the already complicated surgical effort on her eyes. Matt and I had wondered about this before when we were first told that they thought she had two null points. Because the surgery works to bring the null point midline, if she has two, how do you pick one? We asked the doctor, if we 'chose' the bottom one, would that mean that she would try and roll her eyes all the way to the back of her head?
"Yes."
Sigh.
I think that I was hoping that by adjusting her eye muscles, she would automatically just keep them there, and not want to roll them (here I am assuming that she has a choice again). But that's not necessarily the case.
Summary is that we will try and put off the surgery as long as possible to try and see what pattern she falls into. If we can hold out until she's 5, that would be ideal. The doctor mentioned the numbers "80" and "20" -- as in, there will probably be a position that she favors 80% of the time, and so we will adjust for that. What happens the other 20%? I don't want to think about it. And then she threw in, "there's still a chance that she will have driving vision." Shit! I had forgotten about that. A friend said to me: Her boyfriend will just have to drive her around on his motorcycle. That sounds so normal! I hope.
And to say something positive about the whole experience yesterday (I am TRYING to be POSITIVE and NOT think that this is ALL MY FAULT THAT I GREW HER WRONG) was that the doctor sat with us for at least 45 minutes just talking. I never felt rushed, or like I was being pushed out the door. And then she called me today to say that she did some more reading about Bug's condition last night after work and found out that 35% of patients with the alternating version of nystagmus have albinism. Right now 35% might as well be 1000% considering the percentages that we've been hearing so far. An official diagnosis of albinism does nothing to change the course of treatment for Bug. It just, as the doctor says, "buttons things up a bit." We are hoping to know for sure in June.
I said to her today that I wish Bug could just tell us. And then I asked, "do your older patients with nystagmus tell you where they can see the best?"
"No," she said. "If you hold a kid's head still and make them look a certain way they will just tell you that they don't want to, or they don't like it. It's not until they're teenagers that they are able to describe that they can't see as well a certain way. Well, as much as teenagers will tell you anything."
Touche, salesman. Touche.
P.S. The $110 I had to pay yesterday in co-pays between myself and Bug is seriously highway robbery. I am in denial about how much of our income goes toward out-of-pocket medical expenses. Which I learned today from our tax accountant are "difficult to write off unless for you they exceeded (in 2010) $6800." Was that a challenge, my friend? Let's add up these receipts. (It did exceed, easily.) Tears.
Bitch please. I am so much more fun than a 14-day Caribbean cruise with a balcony room.
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