The No-Hope Diagnosis

This is part of the story I have put off writing.

Maybe if I get this one out of the way, I can finally finish this book.

Rose was nineteen years old at the time.

She had experienced febrile seizures since she was eighteen months old. Her first real seizure without fever was at age four.

She had tried eleven different medications in many different combinations.

In June of 2012, we took Rose to a Mayo Clinic.

She had been seizing and getting injured.  She was home-bound the last half of her senior year in high school.

She was in danger. We needed the best doctors in the country to study her case.

We went.  Many tests were run.  We hoped that we would have a clear picture of what was happening in her brain when this was over.

All her records were taken…pages in notebooks, scan films, discs of MRI’s and CT’s.

We were hopeful. It was time to slay this dragon.

The doctors would meet in mid-July to collaborate on her case and call with results and recommendations.

We waited impatiently to hear from them. 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.

I cannot remember how many days that I walked around in a fog.

BUT THEY WERE WRONG!

The best and the brightest experts in their field still aren’t God.

Was it the new drug from Germany?  Was it 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 improved after that.

So if you get a no-hope diagnosis, remember Rose.

There is always hope.  Even if it is just 5%.

SEIZURE MAMA

Author: Flower Roberts

I am a garden blogger and a mother. This blog is about my daughter Rose and her triumph over epilepsy. We are in the process of completing a book, Watching Rose Rise. We need folks who understand life with seizures to give us some feedback. Rose is off at college right now so I, Flower, am running the blog PLEASE come and join us. We want to get this right.

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