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.

1 comment:

  1. Thanks for the response- I was just curious to get your thoughts :)