Missing the Window

Chapter 43 from memoir, Seizure Mama and Rose by Flower Roberts (Amazon)

After the “woodstove” seizure we scheduled another week at the Epilepsy Monitoring Unit at our favorite hospital. This was our third trip to an EMU. We knew what to expect. Rose was homebound from school.She was nineteen years old. Her senior project was about all the types of epilepsy surgeries and their success rates. We all knew that surgery might be her only hope.
All the stops were pulled out for this visit. We needed a special test to pinpoint the source of her seizures. The procedure required two sets of data for comparison. One SPECT would be done between seizures(inter-ictal) and the other would be done during a seizure. I will not pretend to understand all this. I know that to get the pictures needed, radioactive dye has to be injected before the scans.
We got the first scan done. I guess this was like a control in an experiment. This was the “normal” picture of what was going on in Rose’s brain. The hard part was to get the next data. A seizure had to be caught early, the dye injected, and the scan done immediately afterward. The technicians who did this scan were highly trained, but this hospital only paid the specialists to work from 7AM to 7PM weekdays. This meant that if Rose had a seizure outside of that window, it would be wasted. No point injecting the expensive dye; no one would be on call to do the scan.
As luck would have it, Rose had many seizures, but not between 7AM and 7PM. We left without the results that we needed. All involved were disappointed – her doctor, her beloved nurse Micheal, and the staff. They all knew Rose well at this point and understood that she was in danger. We all knew that there was no hope for a healthy future without some new treatment to stop these terrible seizures.
We did start on a new drug after this stint at the EMU. I had read about a totally different drug that had just come out in Germany. I asked about it to someone involved with Rose’s case. This new drug worked with the potassium channels of nerves, instead of the usual sodium channels. I do not know anything about pharmaceuticals, but I knew the twenty plus drug combinations that we had tried thus far were not working. We were ready to try any new drug from anywhere.
This new drug was ordered and added to her cocktail. We were desperate to help Rose. She was to the point of wearing a bike helmet during certain times. We couldn’t prevent these seizures, but we could protect her angry brain.
Seizure Mama speaks to parents.
Going to an EMU(Epilepsy Monitoring Unit)is a scary step. We were amazed at the highly skilled people who worked there. We made three trips to the EMU at our favorite hospital in a neighboring city. The doctors and nurses there knew how to put us at ease during this stressful procedure. Nurse Michael is one of Rose’s heroes. His visits to her room were like rays of sunshine. The team of neurologists really study the patients while they are in an EMU. Although we did not get the test results we could use for surgery, we did get information that was used to make better drug choices. The new drug from Germany was a game-changer.