Three More Seizures, One More Drug

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.

Just Joined the Diastat Club

There are some "clubs" you never want to join and this is one of them. Last Saturday Evan had a seizure that lasted too long and we had to give him Diastat to stop it. The seizure stopped quickly, so fast that it may have stopped on it's own or may have been helped slightly by the Diastat. Evan did really well with the medication overall. He was very, loopy and wobbly and with slurred speech was talking about the rules he'll make when he is President, then he went to sleep for about 20 min. and woke up hungry. He went to a birthday party in the afternoon and we all went to a friend's house in the evening. So as far as Evan is concerned, all is well.

As for Rob and I, we are feeling a bit defeated. We will get past this just like we always do but the rebound time is taking longer. The lack of control in a situation like this is burdensome and something we haven't felt in a while.

I think the worst part of the whole event was when Aria started a timer and said, "I hate Epilepsy." She's only 8 years old and should not have to know what epilepsy is much less have an emotional reaction to it.