Around mid-August, 2009 I became incredibly ill with the H1N1 (Swine Flu) at approximately 9 weeks into my pregnancy. It is speculated that while my body was in survival mode, my body was hesitant in her production; and production at that time was primarily brain function and specifically the hippocampal. What resulted was a hippocampal malrotation, a defect of the hippocampal that results in Epilepsy. The hippocampal is responsible for behaviors, memory, learning and emotions. From birth, Rebekah has been extremely difficult to deal with and prior to her Epilepsy diagnosis, she was identified as having Intermittent Explosive Disorder – an on-point conclusion (but we would later realize it was Epilepsy that triggered her Explosive behavior).
On the day of her first seizure she presented with stroke-like symptoms, she lost all ability on her left side and became very incoherent. I called 911 at 2:15 p.m. on September 25th, 2013; upon arriving at the Emergency bay via ambulance at 3:45 p.m., we were told that she had several Grand Mal seizures during transport (a 40 minute drive) and they had just stabilized her. She went status on her very first seizure.
We left the hospital that evening with discharge paperwork that diagnosed Rebekah with Epilepsy. We were shocked! I had never heard of Epilepsy, but I learned quite a bit that day; and every day I learn something new about Epilepsy.
I have learned that Epilepsy is relentless. Epilepsy does not care. Epilepsy is recalcitrant, and just when I think I’ve figured it out, it catches me by surprise. Epilepsy affects the entire family. Epilepsy affects us wherever we go, and it affects those around us when we go. Epilepsy pays no mind to convenience. Epilepsy is multi-faceted, and multi-symptom. Epilepsy is ruthless!
Rebekah has had five Emergency Room visits since her diagnosis. Each seizure is progressive, and her next one could prove deadly. Rebekah has failed four medications and is currently failing her fifth. We are currently seeing an increase in nearly every seizure type, and our stress levels have increased ten-fold.
Our position in this is evident, we are desperate. We are desperate for a cure. We are desperate for her to live a normal childhood, to grow up without liver damage from pharmaceuticals, without brain damage from a status seizures; and quite frankly to just live.
We know the answer to our concerns is Cannabis, and we advocate openly, loudly and without apology.