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.

Serial Casting

Evan is just hanging out in the office waiting for Dr. Hart.


The process of serial casting.

The finished product. Evan also got a cast shoe to go over this so he can walk on it. I have arranged for him to use his wheelchair on the bus and at school if needed for the time he is in the casts.

I should explain a little about serial casting. Basically, each week they will take the cast off and stretch his foot more and then put another cast on and this will go on for about 6 weeks as I understand it. While we were there we also had an analysis done in the motion lab which is basically a video of Evan walking and using his left hand and then when we are all done we will do another one so that the Dr. can keep track of his progress. I am hoping that I will get to see Evan walking flat footed on both feet, that would be such a miracle for us and for him. So I will be spending a lot of time at Shriner's over the next few weeks and probably over the next few years doing this to keep Evan from toe walking.We will be doing Botox on his left hand on May 26th so we are not away from Botox all together. I feel like good things are happening and I am really glad to be working Evan's spasticity and gait. And with the serial casting Evan will get to have a different color cast each week, well they only have 3 boy colors so it will be blue, red, green and then repeat.

Happy/Sad Friday

I guess we will start with the sad part first. Today I picked up Evan's first prescription of Anti-seizure medication. I was very sad and angry that I had to do this, I am having a hard time accepting that Evan has had 2 seizures and will most likely have more and this is only the beginning of our journey in this area. I worried and worried about seizures for so long and then when I began accepting that it may happen and was comfortable that I would know what to do when it did I worried less and less. Of course now that is has happened I worry more, I get butterflies in my stomach whenever I am away from home or Evan is at school and my cell phone rings. Whenever Evan stares I always call his name to make sure he is not in a seizure. I watch him while he sleeps looking for any odd movement. I scour the internet for information on seizures and different types. This is just hard for me to handle but I know just like everything with his "terrible palsy" (borrowed this from another cpmom) I will learn to cope with this new development also. But I certainly do not have to like it and I will complain about it. I am sure it is weird to take a pic of the medication bottle but I am a scrapbooker and I am going to document this new phase in our lives.

Friday January 25, 2008 At 4:43 pm we got Evan's long awaited Dynavox Communication Device. We were so excited. Evan knows it is for him and it has been hard to program it when he is around. We started this process in July so we have been waiting a long time to get it.

You cannot tell in this picturebut Evan's Dynavox is blue with ablack carrying case to protect it. Wewill definitley need that. Look for Evan tobe "talking" up a storm the next time you see him.I will be going to Dynavox University on March 5thto learn how to make the device the most useful for Evan.And we will also be going to Sac State in the spring to get help as well.I want to be able to get the best use out of the device for Evan. I just know that his Dynavox will help him go far and will be the key to a whole new world for him. I cannot wait for the day when he is able to use it himself and I can really know what is going on in that cute little head of his.