Chapter 46 of Seizure Mama and Rose by Flower Roberts (Amazon)
At this point Rose was nineteen years old. She had graduated from high school. Her seizures were not well controlled. There was no aura, so she usually fell face first and got hurt when a seizure occurred. Seizures had been part of her life since she was eighteen months old. We had tried eleven different medications in many different combinations.
We needed some expert help to get her so she could drive a car and be independent. It was time to put all the cards on the table and devise a plan for Rose’s future.
The summer after her high school graduation, we took Rose to a famous Epilepsy Center. We drove across the country to get there. We made a vacation out of it. We visited a famous zoo, a botanical garden, and an aquarium along the route.
We arrived at this giant state-of-the-art facility. It was the epitome of efficiency. The place was amazing. The doctors listened to her history and read her medical records. They looked at all her previous scans and films.
Rose was checked into their Epilepsy Monitoring Unit. They were trying to get that ictal-SPECT that we did not get during our stay at our favorite hospital back home. We hoped that when this was done, we would finally have all the pieces to this puzzle. We would have a clear picture of what was happening in her brain.
This was Rose’s fourth stay in an Epilepsy Monitoring Unit. We knew the routine but we also knew there may be surprises. Come what may, it was time for answers. We needed to know where these seizures were coming from. It had been speculated that the origin of the seizures was in the left parietal lobe of her brain, but there were no clear results to prove this.
What we had been through thus far in EMU was referred to as Phase I. The EEG electrodes are glued onto the outside of the skull in specific locations. Each has a different color with leads running to a monitor. Each electrode picks up the electrical activity of its point in brain. The results looked like squiggles on a long musical scale. The trained EEG-readers can tell where the abnormal activity is coming from by reading the spikes and peaks on the lines.
We had never considered proceeding to Phase II, which involves opening the skull and placing the electrodes directly on the brain. Rose’s dad and I had decided that we would not proceed to this next step without at least knowing which side of the brain the seizures were coming from. We were not going to make this decision for Rose. If we did get results that pinpointed which side was the source, Rose would decide what to do next.
The two tests we needed were called SPECT scans. Each required that a radioactive tracer be in injected twice, once during normal brain function and once during a seizure. The dye shows up on a scan so that the source and path of the seizure’s progression can be detected. We had gotten the inter-ictal(between seizures)scan done at our favorite EMU, so what we needed here was an ictal-SPECT(during a seizure) for comparison.
On the sixth day of our stay at this famous hospital. Her drug levels were low or close to zero. She had experienced two quick seizures. Everyone was anxious about catching the next one. It was strange to be actually hoping for a long seizure, but that was what we needed. Everyone was on high alert. There was a button for us to push if we thought Rose was starting to seize. We did not take our eyes off of her.
Suddenly the nurses and technicians rushed into Rose’s room. We looked up puzzled. Had one of us pushed the button by accident? They turned on the monitor in her room. The screen lit up with squiggles. We paused and held our breath. Slowly Rose’s eyes went left. Slowly she stiffened. It was like watching everything in slow motion. The seizure began to creep across her face and down her torso. The nurses injected the precious tracer. This was finally going to happen. After all these years, we were going to know where the dragon hid in her brain. Maybe now, we could stop it. We had hope.