It almost seems like the diet has
been ineffective the last couple of weeks. Jonah has been having more random
out of nowhere drops lately.
His neurologist suggested to
increase his calories 5%. He has enjoyed getting bigger snacks but I'm not sure
it has helped any. We have also added an additional half pill of Keppra with
his night dose. That hasn't really seemed to help either.
Today is the 9th day of the
calories adjustment and the 5th day of the added Keppra.
2/2 8 Seizures
2/3 2
2/4 2
2/5 5 (cookie amount figured out)
2/6 4
2/7 4 (first day with complete 5%
increase)
2/8 4
2/9 6
2/10 3 (1 was a TC )
2/11 3 (1st night or added Keppra)
2/12 5
2/13 4
2/14 2
2/15 2
2/16 1
2/17 1 so far
This is not including any
activity right after he falls asleep but that has been pretty minimal lately.
It's like one seizure type or time of day increases and other types
decrease.
Around the time we were last in
the hospital which was January 6 he was only really having anything upon
falling asleep or while sleeping. Although that was not good, for us it was ok
because he was always in a safe place, in bed. Now, he will be playing and all
of a sudden drop down out if nowhere and hit face in his knee or the floor.
It's pretty scary. Even if you are right by him you cannot predict when it
might happen to catch him.
One thing we have realized is
that when he is fussing, upset or crying he needs to be in a safe place because
that is a huge trigger.
I've
heard a lot about blood ketone monitoring and glucose monitoring. I did mention the blood ketone reading the his doctor when we were in the
hospital and she didn't seem to think that was necessary that it
would be the same thing only a couple hours later or something.
I'm so thankful that he is not
fearful of having a drop. Here is a video of a
random drop:
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