Your Advice Please

I don't know why, but I have been debating for a while whether or not I want to blog about this. I blog about almost everything, so I'm not sure why I've had a hard time deciding if I want to talk about this or not.

But, I've decided to go ahead and tell you what has been on my mind just about 24 hours a day lately. This post will probably be kind of long, but I am just really hoping someone somewhere might have an answer or know someone who might have an answer.

On to my concern- sometime a little while after Hailey turned one I noticed her doing something odd with her eyes. When I would be rocking her to sleep her eyes would turn up towards the right side of her head. At first I thought- well, she's tired and her body is just relaxing and her eyes are rolling up as she is falling asleep. I did ask her doctor about and she agreed with me- totally normal.

A couple of weeks later Hailey did it one day while in her car seat and then again while in her high chair. Both times she was tired when she did it, so I still thought- maybe it was a tired thing. But, the way it looks is unusual- her eyes go up so far that you can see mostly the whites of her eyes and only a little of the actual colored part of her eye (which I'm sure has a much more technical name).

Then she started doing this little head bobbing thing where she moves her head so that her ear almost touches her shoulder. (It does not happen at the same time as her eye movements but it is just another unusual thing). She was sick with a cold at that time so I thought maybe her ear hurt. We went to the doctor and her ears were fine. I explained the things she was doing. I had a done a little Internet research and found something called Paroxysmal Tonic Upgaze which seemed to kind of describe what Hailey was doing. I told her doctor about it, she had never heard of it but went and looked it up. She wasn't sure because she said Hailey did not meet all of the criteria. But, she referred us to a pediatric ophthalmologist.

That was all right before Thanksgiving. I made her appointment with the eye doctor for Dec 17th. Then I actually didn't see her doing it much anymore and thought about canceling the appointment. Well, last week when she was sick she started doing it a lot more. Whereas before I might only see it a couple of times a day- or not at all- I've been seeing it quite a bit. Now they are not only turning up towards the right, but to the left as well. And, sometimes they do a little roll right across the top. It is very quick- seconds at the most. It happens and she closes her eyes and they are back to normal. While she has been sick it seems like sometimes coughing triggers it. The other day she fell and bumped her head and then did it several times after the bump. While she used to only do when falling asleep the last few days I've seen her do it right after she wakes up too.

So, anyways we decided to keep the eye doctors appointment. He asked us lots of questions and watched Hailey for a while to see if she would do it. (Of course- she did not)

A bit more information about what she does: When she does the eye rolling she doesn't have any other unusual movements with her arms or legs, which should rule out seizures. The frequency of it really varies- there have been days I haven't seen her do it all. While she's been sick I have seen it as many as 20 times in a day. She doesn't act like it bothers her- just blinks her eyes and then they look normal.

The eye doctor's opinion was that she does not have this Paroxysmal Tonic Upgaze that I found on the Internet. (although he gave me compliments on my intelligence for finding the information about it, and asked me if I had a medical background. I'm sure that's a normal thing- tell the parents how smart they are so they don't feel stupid for bringing their child in).

He said he'd been practicing for 17 years and had never seen it and in fact he only knows of 14 confirmed cases. So, it would be very unlikely that she has such a rare thing. Although, someone has to have it, even if it is rare.

He said he had 2 ideas of what he thinks could be going on. First- dry eyes- she's rolling her eyes up and blinking to moisten them. I told him there is no way it is that. Of course, he hasn't see her do it, so he can't quite understand.

His second idea was that it could be a childhood tic. He said a lot of kids have tics and do things with their eyes and faces and usually outgrow it. I do think he has a point about a tic, but then I wondered why Hailey's pediatrician never even suggested that when I was explaining the symptoms to her.

Another thing I have noticed Hailey doing (since the appointment, so I haven't told the doctor this) is sometimes she tips her head down towards her chin and looks up at me out of the very top of her eyes. At first I thought she was being silly, but now I think it's an involuntary thing with her eyes and so she has to tip her head in order to see me. I don't know if that even makes any sense because it is so hard to describe.

I'm trying really hard to get it on video but it happens so quickly that it hasn't been possible yet. I found something on Youtube about Paroxysmal Tonic Upgaze and if you go here you can watch it. It's over six minutes long, but it's about a little boy who does things very similar to what Hailey does. He also has seizures though, which Hailey does not. And his upgaze tends to stick longer than Hailey's- so they were actually able to get him on video doing it.

The eye doctor said that even if she had this Paroxysmal Tonic Upgaze that there is nothing that can be done for it. Kids outgrown it and it is completely benign. He said we could put her through all kinds of tests (MRI, catscan, etc) during which she'd need anesthesia (a major risk in itself) and find nothing. But, basically he told me to stop worrying- she's fine and on track developmentally. But, of course I am still worried and every time I see her do it I feel sick to my stomach with worry.

As my friend Kellan would say- On the upside- I've lost a little weight because when I worry I don't eat.

But- I'm just hoping that maybe someone might know something or know someone who knows something to help put my mind at ease.

If you're still here reading- thank for your time.

Don't forget to check out my other blog- Livin' With Me.