Chapter 47 of Seizure Mama and Rose by Flower Roberts ( Amazon)
The team of specialists were to meet to discuss Rose’s case mid-July. They would look at all her records and tests and collaborate on her case. Then the famous lead physician would call with results and recommendations.
We waited impatiently to hear the news. We were on edge. Were we headed into a surgery? Would we be testing a new drug?
When the call came, it was not what we had hoped for.
There were a lot of percentages rattled off over the phone. At some point my brain switched off. All I remember is the no-hope number of 5%.
If they opened her skull and placed electrodes on her brain there was a 50% chance of finding the source. If they found the source and removed it, there was a 50% chance of improvement, along with a 2% chance of morbidity and a 5% chance of serious complications.
The final percentage of any chance of improvement was 5%. I have this in writing. Five percent is way too close to zero percent.
After the phone call, I cannot remember how many days I walked around in a fog.
Seizure Mama speaks to parents:
THEY WERE WRONG!
The best and the brightest experts in their field still aren’t God.
Was it Rose’s new drug from Germany? Was it our cutting out red dye #40? Did something happen during that slow-motion seizure that dammed up the flow through her brain?
We really don’t know why she began to improve after that.
So if you get a no-hope diagnosis, remember Rose.
There is always hope. Even if it is just 5%.
Maybe this was supposed to happen to us, so when it happens to you, you will not lose hope. I wish I could send a message back to myself 10 years ago to tell me to hold on. Never would I have imagined that Rose would graduate from a university. Keep the faith.