I'm 100% certain now that the involuntary opening of the mouth is a new seizure type. This would be a partial seizure, which John has not had before. He has these for 45+ minutes a couple of times a day. During this time, he usually has a flurry of drop seizures as well. It's horrible to see. Lamictal has been known to cause this sort of thing, so that is likely the culprit. Also, John had a lengthy absence seizure today. This is where he just stares off in to space, and you can't snap him out of it. In addition, he had a couple more longer seizures where he will be twitching. I was using the computer last night, and it got quiet (rare around here). I turned around and John was on his back, with his arms in the air twitching, but with a smile on his face.
Because of this, I was ready to get rid of the Lamictal. I called the neurologist today and he was not ready to give up on the Lamictal yet, for the simple reason that the NUMBER of seizures John has had the last 2 weeks has been substantially less. We're scared to death to increase his dose yet again on Friday, but I agree with the neurologist that we have to know for certain that we gave the drug a fair trial. Since the drop seizures have decreased in number, there is a chance that the drug can get rid of a lot more at a higher dose. And, it is true that John seems very good in between the seizures now. He runs around, smiles, and laughs and lets us forget about his troubles for small periods of time. Next week will be interesting. And, if the other seizures get worse again, we'll start weaning the lamictal, regardless of what the doctor says.
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