Wednesday, June 30, 2010

Sometimes You'll Take OK News...

A few weeks, maybe months, ago we noticed something weird about Ellie's eyes. As she tries to focus, sometimes they dart back and forth. I thought it was muscle weakness, that maybe it was straining her eyes to much to focus on something. We knew she could see and that she could follow an object across a room, so we weren't worried.

When the Early Intervention nurse mentioned it, and advised she see an eye doctor, I still wasn't worried.

When I mentioned it to our pediatrician, who called in an immediate neurology visit, I started to get a little concerned. I learned that the medical term is "nystagmus," and it can be a sign of about 40 different conditions ranging in severity. In many cases, babies lose vision because of it.

It could've been something she was going to have anyway or it could have been caused by her previous medical history, specifically some of the drugs she was on.

What else is new?

So I panicked. Researched it on the internet. Tried to stay calm for our neurology appointment. I needn't have gotten too worked up. The neurologist quickly ruled out a neurological cause. That's good, since a neuro cause would have been life-long and completely irreversible. That's the kind of damage we don't need.

In the grand tradition of neurological consults, he did get us worked up about other issues (things that may never even happen and I'm choosing to ignore until they do) but told us this one wasn't one of them. Instead, we were off to see a pediatric opthalmalogist at Mass Eye & Ear.

Fun, fun.

So yesterday, she went. Mike went, since I had to work, and it was a good thing too... because I hear that watching someone torture your child is not a good experience. (I suppose I already know that, though...don't I?) Anyway, three people poked at her eyes, subjected her to eyedrops and vision tests, talked to Mike about things we've noticed, etc.

The end diagnosis was the best possible scenario. She has congenital motor nystagmus... basically, her eyes are always going to do that. They may shake less as the muscles strengthen, but she will always have to struggle to focus. Once she finds her "null point," an angle at which her eyes can hold steady to look at something, she will be fine. She has no vision loss but she will most likely need glasses later in life. Most people with this condition wear glasses but can drive without restrictions.

At least she can see. We'll find a way to work around the rest.

As I said, sometimes you'll take OK news and it will make you happy. We still don't know what caused her condition -- it's even possible that she would have had this regardless of her birth history. It could've been something that happened in the womb, something I did or didn't do... we'll never know. But at least we know now that it will only mildly interfere with her life.

She's going to be OK.

So I'll be OK too.


Nicole said...

*hugs. Hang in there :)

The mom of 4 monkeys! said...

Yuck, the worries that us mommies have is just so overwhelming at times! I am glad that it wasn't the "terrible" stuff though! Is there a possibility that she will grow out of this? I have been told from Ben's eye doctor that a baby's eyes can do amazing things in the first two years of life, I hope this is the case for that little adorable miracle of yours!

Stephanie said...

The opthalmalogist said it was probably permanent. There's a *slim* chance that her eyes will strengthen enough that it won't be noticeable, but they will always do it. I think it will be ok though - we've already started to not notice it as much!

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