Yoshie told me yesterday that John had about 40 seizures that she was aware of on Monday night. Last night, I put John to sleep and stayed with him. Once he fell asleep he had a myoclonic seizure (2-3 seconds tightening up, sometimes a little shaking) about every 5 minutes. It seemed to me that every time he fell in to a deep sleep he would have a seizure that would bring him out of the deep sleep. This went on non-stop. He must have had close to 100 seizures throughout the night. I figured he'd be exhausted this morning but that was not the case. He seemed fine and the seizures stopped once he woke up.
It's very frustrating. We haven't seen this much seizure activity in years. At first I thought maybe he was seizing every time his VNS fired. This still could be the case, but it didn't seem consistent enough so I'm not sure. I suppose it is possible that something got messed up with his VNS leads when they removed the bone from his throat. Unlikely but possible. I'm not sure what we are going to do, but we can't continue like this.
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