Video Intensive EEG Monitoring

For the last 30 hours, I have been confined to a hospital room with my daughter Charlotta as she undergoes Video Intensive EEG Monitoring. As I have mentioned before, she has epilepsy and has had seizures since birth. We have been on a variety of medications over the years, as well as the Ketogenic diet for 4+ years, but nothing has ever seemed to stop her seizures completely. She still has between 5-10 small seizures a day.

Last year, her neurologist wanted to take a broader look at some other treatment options to get her seizures under control. One of the options she mentioned was surgery (yes, as in brain surgery) to remove the particular part of her brain that was the starting point for the seizures. After my husband and I had picked up our mouths off the floor, the Dr explained that surgery was an under-utilized but quite effect treatment in the right circumstances. Those circumstances being that the seizures were indeed stemming from one particular place. In order to determine where the seizures are coming from, we were referred to a three (or more) day session at the hospital where they would monitor her brain waves 24/7.

Fast forward to today: Day 2 of our EEG monitoring. So far, she has had a number of typical seizures -- which is good, because you want to capture as much seizure brainwave activity as possible. The downside to all of this is trying to keep an active 10-year-old girl entertained while being confined to a bed. She has 35 electrical leads glued (literally, epoxied) onto her scalp, which are held in place by a netting cap and attached to a 15 foot cord which is attached into the wall of the hospital room. We have exactly enough cord length to go to the bathroom. Now I know what those poor dogs feel like who are left tethered to a stake in the backyard!

I have to observe Charlotta at all times, and whenever I see any seizure activity I need to press an indicator button as well as write it down on a log sheet. Did I mention that we are also videotaped 24 hours a day and that the lights have to stay on in the room at all times so that the video recording will be visible and that I'm not allowed to open the window or even the blinds in the room as that will also mess with the lighting for the video recording and that she was on orders to get only 4 hours of sleep last night because sleep deprivation can be a trigger for seizures?

OK, I know I sound like I'm complaining, but I do realize in the end that this information will be helpful in the treatment of her seizures even if she's not a candidate for surgery. I am grateful that we have this kind of service available to us, and that it's so close to home. Plus, I've had some great visits from family members to help pass the time.

It is also a very humbling experience to be on the Neurology ward of Children's Hospital and see all the other kids who are much worse off than my own. It reminds me that good health is a true gift and that we should remember to appreciate our healthy children.


Through it all, Charlotta has been a real trooper. She actually likes hospital food, thinks it's a real thrill to be able to eat in bed, and loves having Mom all to herself to play Barbies with ... talk about a glass-half-full kid!