EEG! {Sept 2014}

Owen's EEG was today. This time we were checking to see if his ESES had improved with the recent Onfi increase. Owen wasn't too happy about being at the hospital at first because he thought he was going to have to stay overnight. We brought his Bug and blankie that he sleeps with since we need him to sleep for part of the EEG, he thought that meant that we were staying overnight. Once he realized we were going home the same day, he was much more cooperative!

Luckily, Owen fell asleep right on command again. This is nice for us since it means we can have day long appointments instead of overnight ones. Once the EEG was over, we headed straight to the neurologists office for the results.  It made for a long day, but it was nice to not have to wait for the results.

So, the bad news is that the EEG showed no improvement whatsoever. Since receiving the ESES diagnosis, we have increased his ketogenic diet ratio twice (basically increasing his "dose") and doubled his Onfi with no improvement at all.

The good news is that Owen has not experienced any of the cognitive declines usually associated with ESES, although we have noticed some pretty major motor skill decline since increasing the Onfi. The next step in treatment would usually be to start massive doses of diazepam in the hospital followed up by EEGs every two weeks. This would have some very serious side effects. Our doctor is just as concerned as we are about adding in so many drugs when he's not currently experiencing problems since the drugs can cause the same cognitive issues we are trying to prevent. We have decided to play things very cautiously. Right now our next step is to reduce the Onfi back down to previous levels since he's having pretty bad side effects and it isn't doing anything for the ESES. If that goes well over the next two weeks, we will continue dropping the zonisimide. We dropped that from 175mg to 150mg a few months ago and it doesn't seem to have caused any problems, so we hope to be able to get rid of that. The next step will be to possibly increase his lamotrigine since he's outgrowing his dose. His blood levels of that are very low right now. After we get rid of a few of the other drugs we will have another EEG in about 4 months and then decide about the diazepam treatment.
At this point Rod and I are relaxing a bit. We've been pretty stressed about the upcoming treatments. It's nice to know that we will have a bit of a break from all of it over the holidays (assuming the med weans go well). I'm also hoping reducing the medications will help with his motor coordination. We were planning on starting him  with writing his letters for kindergarten, but right now he's really not physically capable. So, wish us well on the medication reductions!