December 19th & 20th EEG

On Monday December 19th we headed down to Iowa City to the University for another overnight video EEG.  At our neurology visit earlier in the month, the doctor had stated that she wanted to do an EEG as soon as possible to see if the all of our theories were correct regarding the addition of Depakote and the decrease in abnormal electrical activity in the brain.  We all figured this had to be the case because he had been seizure free for nearly 6 weeks, his walking was better, he seemed to be learning new things (i.e. what does a cow say - to which he would respond appropriately with "moo") and he just seemed like his head was "clearer". 

The whole set up of the EEG and getting hooked to the electrodes is so stressful for all and then being stuck in a small room attached to wires and not being able to leave.........horrible for a 3 year old.  Especially horrible when he could see all the activity in the halls and he also knew there was a wagon and a play room not too far away and he really wanted to be there and not in his room.  The last EEG we had earlier in the year was a 3 day event, so I really shouldn't even complain about a mere 24 hours.  We survived and the next morning I was surprised when our own doctor showed up to our room - as Tuesdays and Thursdays are normally her days off to spend with her own young children.  She was pretty excited to come and talk to me and for good reason. 

She took me into the EEG room and pulled up the EEG from April and then placed it next to the new one.  I have no clue how to read an EEG, but even to my amateur eye, I could tell there was a difference.  The theory was correct.  As Dr. Joshi put it, "This EEG is 100% better than his last EEG".  It obviously wasn't a perfect EEG, but the Depakote was clearly making a big difference in Beau's abnormal electrical brain activity.  His EEG in April, the doctor had to look hard to find any normal electrical activity and with this new EEG she had to look hard to find the abnormal electrical activity.  It was what I like to call our Christmas miracle.  Granted, we know this won't last forever, but it's so nice that the poor kid gets a break for a while. 

The doctor said that at our April 2012 appointment she will discuss surgery in greater detail.  She said that she would have to have Beau have another PET Scan (this one NOT post-ictal like his last one) and he would have to go to Chicago for a MEG Scan (apparently the closest location to have this machine).  From there, if the team of doctors and specialists thought it should go further, they would do the internal EEG (they actually open up the brain and place the electrodes directly on the brain).  They have to determine if they can specifically say the abnormal activity is only coming from one side of the brain and so far we have some conflicting information.  Deep down, I don't believe he will be a surgical candidate.  The tests (so far), all show an abnormality on the left frontal side of the brain close to the midline.  This would indicate that any time he had a seizure it would be his right side that would be affected.  Yes, this is the case - some of the time.  But, for the first year of seizures with Beau, he would be affected on his left side and would be paralyzed on his left side for 2 hours after a seizure.  This is where things conflict.  This makes the doctor believe that the activity is so close to the midline that it is bouncing back and forth, which would mean, she wouldn't do surgery.  She still seems pretty convinced that it's only on the left side of the brain, but I'm not - too many seizures that have affected his left side of the body - indicating a point of origin on the right side of the brain. Her other thought is that if brain surgery isn't an option, implanting an VNS in his chest might be. 

Here is what I know for now: the abnormal acitivity has slowed down drastically, he's happy and loving and he's not having seizures right now.  Surgery may never be an option for Beau - time will tell.  For right now, we're grateful for the way things are :)