This has been a rough week for us. After Evan's big seizure on Saturday he had three more on Tuesday morning. These were different though and he was fully aware, completely lucid and we couldn't see any movement or shift in awareness or personality that would clue us into seizure activity. They were simple partial seizures and during the seizure Evan told us he knew he was having it and that he mostly felt weird in his leg, hip and butt. Later he said, "Seizures feel wierd and I don't think they're good for me. But you know what? Sometimes weird feels good." I guess if you're going to have a seizure this is the best attitude to have about them.
After calling the neurology office again, we are now increasing Evan's Trileptal, to a level we know could be toxic for him. The hope is to halt the seizures. We will watch him closely and pull back on the dosage if he can't handle it. The reasoning for this is because it is clearly time to introduce an additional drug (Lamictal) that will hopefully give Evan seizure control again and it takes several weeks to ramp up to a therapeutic dose. When the Lamictal is at a higher dose we'll start to pull back on the Trileptal.
So now we're waiting and watching and hoping for the best.