24 Hour EEG

I'm sitting in the hospital in a state of shock. I cannot believe what was just told to me. I literally feel like someone has punched me in the chest. It was decided to bring Ethan in for a 24 hour EEG because his tremors have come back. We had assumed it was being caused by the Depakote, and we were very excited to see how much better his EEG was looking, and start weaning the drug. So yesterday we got up here, and got Ethan all hooked up to the machine, and waited. Things were looking pretty good, just a spike here and there. He had one little episode where he was drinking and staring off at the TV. He does this all the time. I didn't think too much of it, but the EEG screen did show some activity, and then right after he had gotten up to use the bathroom he went into a tonic clonic, pants off and all:) It was about 3 minutes, but I was happy to have it on EEG because he has been having a few recently, and this would give them the opportunity to study it. He didn't wake back up after that, and slept all night until he woke with a smile this morning. I was thinking all was well. I was upset he had the seizure, but if he's going to have one, this is the best place he could do it!

Still happy through it all, fat lip and all!

His neurologist and her assistant just came in to go over the EEG results. She told me the episode was in fact a seizure, a very prolonged atypical absence seizure lasting about a minute. Regular absence seizures last 5-10 seconds, but Ethan's are hard to distinguish because he moves and acts pretty normal, he's just not all there. Then obviously she said she saw the large tonic clonic. Then she told me they saw a few myoclonics as well. She said they were very subtle to be seen, but obvious on EEG. I haven't seen a single myoclonic seizure in over 6 months, so I thought it was odd. So I asked her how many she saw expecting the answer to be 2 or 3. She said 20. In the 22 hours he was hooked up to EEG he had an atypical absence seizure, a tonic clonic, and 20 myoclonics. My heart sank, and I couldn't hold back the tears. This whole time we thought he was only having 1-3 seizures a month, and that his condition had drastically improved. He's actually having more like 600 a month. She was able to see the increase in tremors after the myoclonics, and it was those, and not the Depakote that is causing them. So now I feel we've taken a huge step back. We are increasing the Depakote for now to see if that helps, and we will confirm with EEG in a month or so if it has. After that we have one other med we can increase, and also try to increase the ratio on his diet to 4.5 to 1.

My heart is aching right now. It hurts for the loss of what we had thought was our lives returning somewhat to normal, and it hurts so very badly for my boy. He's just a baby still, only 4.5 and his brain is being bombarded by electricity that has taken him away from us. I feel like I did 8 months ago when this nightmare was spiraling out of control. So hug your children extra tight tonight, and if they are lucky enough to be healthy, don't take that for granted.

Sleeping boy