Saturday of seizures

Yesterday I woke up & gave Evan his meds because I want to give him his meds close to the same time every day. He woke up an hour later. About an hour after that the seizures started. I called the dr because he had almost 10. I was told to give him a 10ml dose of Keppra & give it 20 mins. Evan was sleeping when I gave it to him. He woke up around 12 noon & by 2p had about 6 seizures so I gave him diastat as per dr order. It seemed to work for a few hours. They came back pretty steadily. I called the dr & he said I coul give another dose of diastat. So I gave it with all his other meds & he went to sleep. I really don't know if I should just let him have seizures or if I should push for more seizure control? He is already on 4 meds.

7-24-12 through 7-26-12 EMU Stay

So we headed off for another stay in the EMU. The child life staff at our hospital is so awesome. Evan got to have the iPad for about 2 hours.

This really helped to keep him occupied while he was being hooked up to the EEG. Evan is such a trooper. He just goes with the flow so well. He did not even fuss when he was being hooked up to the EEG. I know the iPad helped a lot with that but a lot of it was Evan as well. He knew the tech from our last stay and he did well with her that first time as well. There is one EEG tech who has hooked him up before and I think she scrubs too hard so he just cries when she walks in the room. I was so glad we did not have to put him through that this time.

Being in the EMU can be tough because it involves a lot of sitting but Evan does OK. We do take trips to the vending machine and to the playroom.

So now for the nitty gritty information. Evan's EEG was very active on our first day. So the Dr. ordered a steroid via IV. I will give Evan and the IV nurse a thumbs up for both doing such a great job. The night time EEG shows a lot of activity. So during Tuesday night Evan got an IV dose of Keppra and a regular gtube dose of Vimpat. Then he got a 2nd dose of Keppra. Wednesday morning we noticed a major improvement on the EEG. This was exciting. So we officially started the new medications and held 2 of his other meds. I still noticed quite a few seizures on Wednesday but the EEG looked much better in between the seizures. Wednesday night he got another dose of steroids and a big dose of his clobezam to help break the cycle at night. Thursday morning his EEG was looking so awesome. We were able to go home.

Evan was so happy to get his EEG leads off. He was happy to be off of the EEG tether as well. We hung out for a while after he was unhooked but soon we were heading for the elevators and home.

Evan helped carry some of our many bags.

So we went home on Thursday afternoon. I had not seen seizures all day. I was hopefull that we may have found good control. Then we get home and I am setting up his new car toy and bam- seizure. That night he had a few but I was OK with up to 5 in a day compared to the 20 that he was having. Friday they started coming back with a vengence. Friday night he had a ton and I was going to call the dr. but thought I should give his meds and put him to sleep and see what the next day brings. It was late and he was due for his meds.





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.

Update on Evan 7-2012

It has been a while. I am going to do a short bulletted update of important things that have happened.

August 2009- Make a Wish trip to Disney World

August 2009- Started Kindergarten in full inclusion classroom

Summer 2010- started having drop seizures

August 2010- started 1st grade in special ed classroom- best choice ever

October 2010- Hospitalized for Seizures, got gtube

November 2010- Beginning of seizure free period

August 2011- Started 2nd grade in same special ed class as 1st grade

November 2011- Tendon release surgery

March 2012- Seizures are back

Skipping Ahead

I'm not going to go into great detail to update on here but I hope to post more often.