Sunday, June 12, 2016

Week 13

Things are going well.

Cailyn was sick with a high fever for two days a week and a half ago and you could tell it lingered. She was really just ... meh. Slept some, but her "sparkle" (which is the term I'm stealing from the family of K's b'day buddy Farren) was just dimmed.

The past two days she totally rallied. She is super hyped up again and "dancing." Legs kicking, arms flapping, giggles.

We're three months in testing Charlotte's Web and we're definitely not seeing negative side effects. I think we'll stay at this dose .30 ml twice a day for at least one more month, do blood work and then decide if we'll increase again.

She seems to have 1 seizure a day, in the am after waking up and before getting on the bus. But we're only seeing this 3-4 times a week. They appear to be shorter in duration as well. We're not seeing them otherwise but they are super short so school and bus staff may miss them. No reports from them on seizure sightings.

My goal is to remove at least one more of Cailyn's prescription seizure meds and leave her on one medication plus Charolotte's Web.

If we increase mid-July then that would be two more months testing that dose until we see her neurologist in September. We'll definitely consult him about any rx meds changes--maybe add another EEG in before further changes.

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