Tuesday, July 05, 2005

2 weeks!!

John hasn't had any seizure activity at all for over 2 weeks now. He continues to get better in every respect. His turn-around is miraculous. I don't want to jinx things by being overly optimistic, but he really is doing well right now.

I think this graph of his seizures speaks volumes (click to get the full size pic):



As you can see, his improvement was dramatic and fast.

Here is a picture of him taken this week:




John still isn't sleeping as much as a 3 year old should. I don't know if it's just because he is so excited these days, or if the Lamictal is causing this. It's obviously a minor issue, but enough of an issue that I'd like to try to lower his Lamictal after a few months if he remains seizure-free. His VNS setting also worries me a little. His duty cycle is officially 56%. The formula is time on (14 sec), + 4 seconds (2 seconds ramp up and ramp down) divided by time on (14) + time off (18). Cyberonics warns that you should keep the duty cycle below 50%, but then they advertise that you can go down to 7 seconds on, 12 seconds off (58% duty cycle). I contacted Cyberonics about this, but of course they wouldn't tell me anything. In any case, I'm not really concerned about this. But, it's another thing to talk to the neurologist about.

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