48 Hour Video EEG in Hospital

We are currently in the hospital for a 48 hour VEEG (Video EEG). The time sitting here in the hospital allowed me to put this blog together.  The purpose of the VEEG is to get a longer term EEG while he is awake and asleep and to video him so they can not only see his EEG patterns, but also what his seizures look like on him when they happen.  A parent has to be with him at all times to record all of his seizure activity.  If he has a seizure you hit a button, talk out loud regarding the type of seizure he had and then write it down on a sheet of paper.  After a few times, you get it down to a science!  He had a lot of seizures while he was here so they will have a lot to look at when they review it.  He had Absence (staring), Myoclonic and Atonic (drop) seizures all while he was here.  We used up two log sheets (front and back) recording his seizures.  At one point I counted 22 in 30 minutes (while he was sleeping). 

For these long EEGs they glue the electrodes to your head and it is a long process to get hooked up (1 hour).  However, unlike the other EEGs he was pretty cooperative and we did not have to hold him down or restrain him.  We distracted him and he allowed the technicians to do what they needed to in order to get him hooked up.  I was relieved because I thought this process was going to be VERY painful for all of us.  Once you are hooked up you have to carry around a backpack that contains the device that is hooked up to the electrodes.  This has to be with him every second!  Most of the time he wore it like a backpack and we called it his "jet pack" like the Lego guys have that his brother plays with.  He thought that was cool, but told me "I can't fly though".  So, we got used to carrying his "jet pack" with us everywhere while we were here.  He was not allowed to leave his room, but could go anywhere in the room and he had a bathroom in his room to use.  The whole process was better than I imagined!  He tolerated everything really well and only started complaining and itching his head last night.  My dude is a trooper!  Attached are several pictures of him during the EEG from hooking up to being in the room to being disconnected.

While he was here in the hospital they checked his level of Depakote again and for the first time since we started he was at a therapeutic level.  They want it between 50-100 and he was at 69.  The good news is that we know he is up to a good level on Depakote - the bad news is that he is still having seizures while at this level.  Dr. Korol wanted to see if increasing his Depakote would help at all so she gave him an IV of Depakote (380 mg) yesterday so she could compare his EEG from the first day to the 2nd day to see if there was any improvement.  Since we were here it was a safe environment to check in and allowed her to see on the EEG how it would affect him.  The reason is that we do not want to raise his Depakote dose any higher if it is not going to affect his seizures in a positive way.  We don't have the EEG results back yet, but I can tell you his seizure activity did NOT decline.  In fact, he had more drop seizures yesterday (4) than the day before (3) and continued to have absence and Myoclonic seizures.  I don't have a lot of faith that she will see any improvement on the EEG with the extra Depakote and if that is the case, we will not raise his levels.  He already experiences side effects from the Depakote as it is so we don't want to increase it if there is no benefit to it.

While here we got a visit from 3 pitchers from the Tacoma Rainiers (Seattle Mariners AAA team).  They were great with him and he had a lot of fun.  He got his picture taken with them and they put it up on the Tacoma Rainiers facebook page.  Our little Joshua is famous!  Check out the pic!

We will be leaving here in a couple hours and are so looking forward to going home and sleeping in our own beds.  We will get the EEG results next Tuesday (April 17th) when we meet with Dr. Korol again.  At that time we will talk about next steps and what to try next.  Chip and I already have an idea of where we want to head next with his treatment, but we'll cross that bridge next week.

P.S.  A big huge shout out and thank-you to my Mom who came to the hospital both evenings to keep me company after Chip left to get Cole from school.  Mom kept me company and helped to keep me from going insane.  She also made Joshua the COOLEST cape - it say "Brain Defender".  How true - that is what we are doing (defending Joshua's brain from these horrible seizures).  It may be a LONG battle, but we ARE going to win!!!!