"Suffering the Slings and Arrows of Outrageous Fortune"

Doctor Update 1

We saw the eye doctor last week for Em’s yearly check. I was all excited because we didn’t have to see the one who was a complete jerk to us last year and was hopeful that this one would be better.

He was. (Whew!)

Everything looks good – her retinas are fine. Apparently she still has a small remnant of a shadow from her eye injury last fall (which she neglected to tell me about until we were on our way to the appointment – I was under the impression it was gone all of these months!) He didn’t seem too terribly concerned about it, particularly after he checked her eyes and everything looked fine.

He took her dry eyes more seriously than did the old doc. Apparently, and this was a revelation for us, Em is an incomplete blinker: she infrequently closes her eyes completely, so the lower mid section of her eye does not have enough moisture. He was able to show me the dry areas when he stained her eyes to check. So, for now, she has additional eyes drops – and thicker ones for night in case her eyes don’t close fully when she is asleep. I suspect we will be dealing with her dry eyes in a better fashion going forward as that is one of his areas of interest.

I was able to bring up her focusing issues and he listened. Basically, he wants us to go to an optometrist – get a prescription for glasses and have them evaluate her accommodation issues. (When he talked about it, he asked the nurse what the other doctor had said about it and she read from the notes that he said we should go to an optometrist to see about glasses. Apparently she did not record that in the next breath he had told us “But, it won’t help.” which is why we didn’t bother at the time. ARRGGHH! These people drive me absolutely nuts.) Anyway, we were able to talk about it and he didn’t poo-poo us and suggested a path to figuring it out, so I am happy.

Also, we talked about the increased intracranial pressure and Diamox; he said he understood that we were using non-empirical methods and if the Diamox helps, then so be it.

Regarding her weird pupil dilation episodes: When we explained what had happened (her pupils dilated and stayed dilated without changing for at least 20 minutes, accompanied by headache and dizziness. Also, it has happened since then, though in less dramatic fashion), he was puzzled. Unfortunately, they had already dilated her eyes for the exam at that point, so he couldn’t do much to evaluate her pupils. He was concerned though and wants us to come back in 3 months so he can check her out. And, he wants us to call if she does it again. She has done it again since, but I am going to talk to the neurology PA about it when we see him next week – I want to try to figure it out a bit more before we go back to the eye doctor about it. I am going to do a separate post about the latest episode, just so I can keep it all straight. I am thinking it is an autonomic reaction at this point….

Anyway, we liked this guy sooooo much better and are hoping we never have to see the other guy EVER again!


Comments on: "Doctor Update 1" (2)

  1. Jessica Douglas said:

    My daughters pupils do the same. It could be chiari , ehlers, or dysautonomia.

    Sent from my iPhone

    • Well, I am leaning towards dysautonomia at the moment, but the eye doctor was wanting to check it out and I know the neurologist will be interested. I really don’t think it is a big deal, but I like to keep track of anything out of the ordinary on here so I can refer back to it. And a video or pictures are a good thing to be able to back up what I am telling the doctors.

      Thanks for commenting!

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