Tuesday, August 30, 2011

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

Monday, August 22, 2011


I haven't written in some time, mostly because Ethan does continue to do very well. But after what just happened I had to stop in and update. Ethan just had a tonic clonic, about 4 minutes long. This is fairly typical in the Harrell household, but I didn't recognize this one because I saw my child hit the floor like normal, I recognized it because Jet was laying on top of Ethan protecting him. He sensed this seizure and jumped into action. I just started scent training with him. A trainer suggested I take his clothing after one of his seizures and freeze it to keep the scent strong. Everyday I take one of his shirts out of the freezer and scent train with him. Guess it's paying off! Now just to get the dog that only barks at the door to bark when a seizure is about to start:)
The seizure this morning.

This is his second seizure in a week which raises some concerns. That's much more than he has had lately so we are checking in with his doctor. I would like him to have an EEG so we can see if he is still having hundreds of subclinical seizures, or if it's just the big ones we're seeing every now and again. We actually had an appointment late last week for a bone scan, blood work, and a keto checkup. They said his labs look amazing, and they're what they aim for so we're doing something right! They were a bit concerned about his tremors returning (though not nearly as bad as they once were) so they took away 125mg of his Depakote a day to see if that helps. They said he's one of their best keto success stories, going from an estimated 2300 seizure a month (or more counting subclinicals) to just a handful.

We continue to battle MAJOR behavior problems. We have been seeing a therapist working on behavior modification techniques, but nothing is working. He told us at our last appointment that there is nothing else he can do, and we need to see a psychiatrist and add some medications. We have been very adamant this whole time that we do not want our child on more drugs, he already takes 18 pills a day. But now we have been told by his pediatrician, neurologist, and therapist he needs them so I guess we're going to try.

And I wanted to address a comment that was made. For whatever reason I can't respond to comments on my own blog.... We don't believe the flu shot caused his epilepsy at all. Ethan always had quirks about him that make perfect sense now. We believe the shot kind of set his immune system over the edge, and and made the symptoms emerge. I have heard from several Doose parents that their children's first seizure happened after a vaccine. I will continue to vaccinate my children, although I probably won't do anymore flu shots. We are delaying anymore in Ethan though until he starts kindergarten next year.