Another EEG

We have been seeing some suspicious movements coming from Truitt for about a week now. This time, I honestly feel like we are seeing true seizures.

He stiffens out his arms and legs, curls his feet inward and quivers his eyes and jaw. It lasts about 15-20 seconds. No matter what we do, whether attempting to make him laugh or picking him up trying to get him to respond, he doesn't. Yesterday morning, I couldn't even bend his legs when he was having one. They were as stiff as a board. He has never not responded to us before when he was having what we thought were seizures in the summer of 2009, which an EEG confirmed they weren't seizures at all. Just some kind of muscle spasms. We still see those daily too, he does LOTS of strange movements. But this time, they are just different. In a not so good way :(

Since we are weaning him off of the Phenobarbital, and he is now down to half of the original dose, we all kind of knew that this was a possibility. A harsh side effect of taking him off a drug that he has been on his entire life. One that we all crossed our fingers wouldn't happen.

So he we go again. We will be admitting Truitt today at 12pm for a 24 hour Long-Term Monitor EEG. Hopefully they will be able to capture him during an episode to see if indeed it is seizure activity. If they don't see him do it in 24 hours, they will keep him for 48. He has been doing it at least once, sometimes twice a day for about a week. I am pretty confident he will have at least one episode in a 24 hour period.

I will try my best to keep everyone updated and post some pictures of him throughout his stay. I am VERY nervous. With the form of epilepsy Truitt has, small seizures like these can turn into big nasty seizures that can become medication resistant. That is my fear. Luckily, we are staying on top of it and getting answers as quickly as we can to make med changes and try to kick his brain back into gear!