This is story #19 in the book.
We had felt good about this neurologist in the beginning. This doctor was cordial, observant and thoughtful. We had previously left all our appointments with several written plans of action in case the first choice did not bring the results that we hoped for. If plan ‘A’ did not work , then we also had plans ‘B’ and ‘C’, if needed. But now we felt like Rose was part of a chaotic experiment without planned strategies or goals.
Rose had a long and strong seizure the day before this appointment. She slept on the way to the doctor’s office. Rose wouldn’t hold her head up during the visit. The doctor seemed not to notice Rose’s lethargic condition. Instead, I was scolded for the numerous calls I had made to the neurology nurses. The doctor mentioned wanting another EEG(electroencephalogram) and the possibility of a VNS (vagus nerve stimulator) placement.
We were taken aback by these suggestions. We thought we had come for a much needed plan for our next trials with different medications. Instead it seemed that we were at the end of the medication regiment and headed for surgery. Our instructions when we left the office were to stay on drugs 3S and 4L. Stay on these two drugs that do not work? What we were doing was not working. Why were we not doing something different?
Here was our nine year old daughter slumped down in a chair, pale and unresponsive and we were supposed to continue on these same drugs and dosages.
We left to office and went downstairs in the building to eat lunch at one of Rose’s favorite restaurants. Rose’s hand was so shaky that she couldn’t use a fork. I had to feed her the slaw. I was feeding my nine-year-old because she could not feed herself, but there would be no change in her treatment? Absolutely not!
We all went back upstairs to the doctor’s reception area. I was so shaken that I could barely speak as I explained to the receptionist why we were back. We had to wait until all the other families had their appointments before the lunch break. It was interesting watching all the other struggling families while we waited. One father was irate and loud about a mistake that was made.
Finally, we got to speak with the doctor again. There was a new plan when we left. I had the doctor write down. I still have the paper. Rose was to go down on drug 4L, off of drug 3S, re-add drug 5K and add on a new drug 6Z. Was this a plan or a punishment? This was like playing a game of random roulette with strong drugs on a young child. Was this new plan better than no change? Hang on. It gets worse from here.