Tuesday, August 30, 2011

Eye update - Nystagmus - update

At Chloe's last vision exam I pointed out to the doctor the fact that Chloe's been turning her head again. It appears that she wants to look through her left eye. I thought we had solved this problem when we discovered the dramatic change in her right eye prescription. But now her head turn seems to have returned. This makes me nervous. Could her prescription have changed dramatically again? It's already a 9. That's pretty significant.

The doctor took a look at her and mentioned her nystagmus (this is where you eyes sort of shake from left to right involuntarily) and that she's finding her "null point." I had sort of noticed her eyes shaking. It's not really obvious but if you look close you can see it. I tried to convince myself it wasn't there. According to him, Chloe can turn her head until she finds her null point - the point at which her eyes stop shaking. He also said that Chloe has had so many problems with her eyes that there are any number of reasons for her nystagmus. He warned me against worrying over internet research (that he assumes I'll do). I left his office without a feeling of comfort.

Then Chloe's Vision Therapist, Linda, came over for a visit on Thursday. She feels like Chloe's not moving around quite as steadily as she was a few weeks ago and that she's not using her eyes together quite as well. I would have to agree. Again, pointing things out to me that I know but don't want to admit to myself. I expressed my worry over the doctor's diagnosis. What if he's wrong? I mean, he only looks at her for a few minutes... She asked if I'd considered getting a second opinion. I don't know why but I'm having such a hard time with that. Can anyone tell me why I find this so difficult?

We have an appointment in about two weeks. The vision therapist has kindly agreed to join us for the appointment. She's so much more well-versed in the language of vision than I. I'm really glad she's going. Also ,the doctor is usually pretty fast and I always feel like I'm sitting on his shoe and hanging onto his leg asking questions as he's leaving. Linda won't hang onto him like that. She'll look at him and smile. And her smile will say, "You might as well sit down doctor. You ain't goin' nowhere an'time soon."

Until then, let the worrying continue...

Update: I think I just figured out why getting a 2nd opinion makes my stomach feel queasy. 1. I want to give this doctor the benefit of the doubt because he knows her really really well and I can't imagine trusting another doctor who just met her and (maybe) read her file.
2. I already switched Chloe's eye doctor once. I'd like to think I made the right decision at that time.
3. I hate ruffling feathers or offending people. (Just being honest. This actually did occur to me.)


Melissa said...

Wish I could give you a big hug right now. You are doing the right thing. You are a good advocate for Chloe.

The Hillbergs said...

Keep working on Chloe...darn eyes are difficult because they aren't just a physical thing - but connected to the brain - which can change and learn and heal. Like, if her arm was on backwards - it would always be like that - you'd never have to worry that you'd go to the doctor's office and find out her fingers had rearranged themselves. But with eyes - you do have to keep up with them because the brain changes things. You are doing a great job! Good idea to bring a second person to the doctor's office too. And a plate of brownies couldn't hurt either. Your MOMMY-SENSE is better than spidey-sense -- if you feel something else is going on with her vision, then do it - get a 2nd opinion - it will only be a little bit of a hassle and it might help to answer questions. Or, maybe it will show you that you like your original doctor the best after all.

Emily and Troy Williams said...

Go with your gut. This is your child we're talking about. If you want a second opinion, go for it. Don't be worried about offending your doctor. If you feel like explaining to him (which you don't have to), just let him know that you *have* to be sure, and the only way is to have another voice in the mix. Tell him you're stubborn. :) I'm sure he's heard it before.

Holbergs said...

Sounds like you have a good plan. That's awesome that the therapist is going with you! She'll make sure everything is done correctly! Keep us posted!!!

Megan B ♥ said...

Oh, Cyndi. Roller coasters these eye issues! Hugs hugs hugs!