Friday, February 21, 2014

The bruises and bumps are back

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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