Seizure Journey

Ever since Evan's seizures started back up in March we have been battling to get them under control. When they started back up we thought they were head drop seizures but they are not. Basically, Evan's eyes will roll up into his head and then he will blink rapidly. They last from 2-10 seconds. We noticed them coming back and called the Dr. who set up a quick 1hr EEG. I got a call later in the evening from the nurse practitioner as the Dr was out. She said that the EEG showed Evan was in Absence Status, meaning his brain was almost constantly in a seizure. The crazy thing was that you would never know to look at Evan that this was happening. His Dr. told me that there is a disconnect from his brain to his body. I don't know if it is good or bad. So at this time Evan was on only three seizure meds Felbatol, Zerontin and Clobezam. The Dr. immediatley took him off of the Zerontin and added the Depakote back in because in Nov 2010 he had the most normal EEG on the Depakote, Felbatol, Clobezam combination. So we started this and hoped it would do the trick. Had an EEG a few weeks later and we did not much of a difference but the Dr. wanted to give the meds more time to work. This put us into the end of May. During the month of June we did not notice a lot of seizures. We went on vacation in the end of June and that is when we started noticing more seizures. These were the eyes rolling into his head and rapid eye blinking.

 So after vacation we ended up in the hospital in the Epilepsy Monitoring Unit. We of course discovered that Evan was having seizures, he was also having seizures that would show up on EEG but not in a physical sense.

While in the hospital Evan spiked a fever adn was discovered to have a double ear infection. Poor guy was not feeling too well.

After some antibiotics he was feeling better and was doing his favorite past time of coloring on the white board.


 So after two days there we left on July 4, 2012 with the addition of a new med -Zerontin & we were going to start a 5th med Sabril. We had been on the Sabril about a week when I was still noticing a lot of seizures still. I called the Dr. almost in tears because here is my child on 5 seizure meds and I am still seeing tons of seizures. So we took away the Zerontin because it really was not working. We increased the Depakote, and sabril and decreased his Felbatol. A few days later I got a call that Dr. wanted us back in the EMU starting on July 24, 2012.