Annual Eye Exam

Today Bug had her annual eye exam with her neuro-opthomologist. Well, I guess I shouldn't say "annual" because she sees him 2-3 times a year but only once a year does he dilate her eyes and do the full prescription check and that was today's visit.

I'll keep this pretty short - mostly because it's late and I'm exhausted, but also because I didn't take notebook like I usually do so I have already forgotten alot of the big words he used!

We decided that we do not need to do another ERG on her eyes. Bug had an ERG last March while she was still taking Sabril/Vigabatrin. The ERG is where they put her under anethesia and then put wierd contacts with little probs on them onto her eyes and do a series of tests to see how her eyes respond and how all the little things in the eyes are working. Her last ERG showed that there was a depletion of the rods in her eyes but that the cones were fine.

We chose not to do another ERG because either way, improvement or worsening, there's nothing we can do. If we were still on Sabril and the next ERG showed worsening then all we would do is get off the Sabril, but she's already off it. The neuro-opt also explained that a lot of children with CVI and neuro issues will have some sort of depletion in rods and/or cones that will improve on it's own as they age. He said that if we really want the peace of mind the ERG will tell us what's going on whether it's better or worse but it's not necessary for her treatment.

He said pros are that we'll know either way, and cons are that we have the risk that goes along with putting her under anethesia and how that always brings on more seizures throughout the day after the test, too. And I guess another con is that it won't change treatment. Then he gave us a moment to discuss it and said that he fully supported either decision we make. Then when he came back we told him we'd like to not do the ERG and we like the option that if we change our mind down the road then we just have to call the office and he'll get it scheduled.

Wow, this is longer than I thought it would be, I guess I'm remembering more than I thought.

Anyway, her prescription is the same as last time but her astigmatism has improved very slightly so the axis is a little different so she received a new prescription afterall. I'm excited to get her some cute new glasses :)

After checking her eyes he said that he agrees with our decision on the ERG because her eyes are not any worse than last time and her tracking, etc. is much better than it used to be :)

This picture is from a year ago when she first started wearing glasses

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Bug's current medications & control:

• Ketogenic Diet 3.5:1 ratio
• Onfi/Clobazam, 10mg: 1 pill 3 times a day
• Vimpat
• Lamictal, 25mg: 2 pills twice a day - weaning up

Unfortunately, Bug's seizures have picked up since my last post to 2-5 seizures a day, they are happening at night after she falls asleep. She will occasionally have one during the day while she's awake. She has not been napping as a side effect of going up on Lamictal. We hope to get naps back after she has stabilized on the full dose next month.