Neurology

We saw our neurologist today for follow-up after Ava’s 24-hour EEG.

Some of you know I can get rather punchy when I’m tired, and for some reason (I blame it on the barometric pressure) I was really tired and headachy this afternoon during our appointment, even though I hadn’t really been dreading it. Every time the doctor asked a question, I would say something goofy or ironic or give him a dramatic, half-funny-half-desperate look…I don’t even remember exactly how it went, because as I mentioned, I was tired, and just really wanting him to help us and not wanting to really be emotional but still be human so it didn’t feel like a business meeting about my child. Anyway, was a good sport about the whole thing and I think I may have entertained him a little bit while he was giving us helpful information. He said something at the end about how we were handling things well, so I guess my punchy-ness was all right.

As for the ACTUAL report you just skimmed the above paragraph in order to get to: The EEG picked up some topical seizure activity on the right side of Ava’s brain while she was sleeping. Most kids with Angelman experience some kind of seizures, so I wasn’t surprised something showed up. It isn’t a crises situation. Things being as they are, I was glad seizure activity showed up so we can address it. If nothing showed up, we would possibly spend the better part of this year wondering whether she was having seizures or not.

We’ll sbe tarting her on medication to address it. I could tell the doctor is used to getting some push back from parents about starting meds. I appreciated the fact that he was sensitive to that…like he was trying to read whether we were going to react to this suggestion or not. Every has their (strong) opinions about medication, but for now we had kind of already accepted the fact that Ava will need some medication to control seizures. It’ll be a low dose to start. Down the road we can try some dietary adjustments to help minimize her seizures, but her feeding issues are too complex right now to add that to her treatment. So, we’ll see how this goes.

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