After all my ramblings on the statistical information surrounding Evan's seizures, the only conclusion we could come up with is that we need more data. We are seeing a couple days a week with no seizure activity and this is really reassuring! So, we canceled the appointment with Johns Hopkins (to start the Ketogenic Diet) and are going to give Vigabatrin a little more time to see if it works for Evan.
We increase Evan's Vigabatrin every Tuesday and we'll be interested to see what the next couple days bring, but Evan has had 3 seizure-free days since Tuesday. We flip-flop between feeling hopeful and helpless and it's nice to be on the hopeful side for a change!
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3 comments:
So, how is everyone doing these days? How is Evan doing on the higher dosage? Hugs to all. We need to get together soon- I am accumulating a pile of kid activity things to bring down for Evan and Aria.
Hugs to all,
Aunt Mary
Mary,
Thanks for your post, we'd love to get together soon and I know the kids will be thrilled with whatever you pull together for kid activity items! I know it's been a while since I updated the blog and I'll do that now.
Lisa
I could not refrain from commenting. Exceptionally well written!
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