This was Rose’s third 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 hotspot 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. They are all electrical leads running to a monitor. Each picks up the electrical activity of its little patch of brain. The results look 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. That 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 test we needed was called a SPECT. It required that a radioactive tracer be in injected during a seizure. This dye shows up on a scan so that the source and path of the seizure’s progression can be detected. We had tried to get this done at a local EMU, but the specially trained technicians only worked from seven AM to seven PM on weekdays. If the patient had a seizure during the nights or weekends, no technician was there to inject the tracer and immediately run the test. Our Rose had her seizure outside the window at the other EMU, so we did not get a SPECT.
We were in the sixth day of our stay at Mayo. Her drug levels were low or close to zero. She had had two quick seizures. Everyone was anxious about catching the next one. It was strange to be actually hoping for a long seizure, but that is what we needed. Everyone was on high alert. There was a button for us to push if we thought she 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.
SEIZURE MAMA
Seizure Mama and Rose 