When 27-year-old Bellevue woman Kelley Fox was 8 months old, she was diagnosed with a rare neurological disorder called tuberous sclerosis complex.
The disorder (TSC) causes non-cancerous tumors to grow in the brain and on other vital organs, resulting in seizures and developmental challenges.
Kelley’s early life was challenging. Her seizures began when she was four weeks old, according to her mother, Leslie Fox. A doctor told her that TSC patients were likely to develop epilepsy and autism and that her life expectancy was 20-years.
Kelley Fox was seizing nearly all the time, and at one year of age, doctors told her mother that the seizures were inhibiting her brain development.
At age 12, her family had to make a difficult decision to allow her to have a surgery that would remove a large part of her brain and to disconnect other parts of the brain that were causing the seizures.
Fox’s mother remembers seeing her after that surgery and hearing her say “mommy, my head hurts,” one of the largest constructed sentences her daughter had ever said up to that point in her life.
Leslie Fox knew the surgery had a significant impact at that moment, and was hopeful about the things Kelley could do from then on.
After learning how to walk and crawl, Kelley Fox began to ride horseback and swim. However, she still struggled with intermittent seizures. Eventually, Kelley qualified for a clinical trial of the cannabis-derived drug Epidiolex, a drug intended to reduce seizures.
Leslie Fox noticed a night-and-day difference in the amount of seizures her daughter experienced during the trial. Based on the results, she had a gut feeling that Kelley was not on the placebo.
Kelley was able to sleep better because her nighttime seizures were reduced. She was able to communicate better and make friends in ways she wasn’t able to before.
“Seizure control allowed her to start the next chapter of her life,” Leslie Fox said.
Kelley, with the help of her family, was eventually able to move into an adult family home where she would have her own space, routine, neighbors and friends.
“It was exciting to see her independence,” Leslie said. “It was important.”
Cannabis as medicine for seizures
Michelle Sexton, naturopathic doctor with a background in cannabinoid pharmacology, said cannabis has a long history of being used as a medicine for seizures, even as far back as the 1800’s in Europe and possibly longer in India.
Sexton said the active ingredient in Epidiolex is nearly 100 percent CBD, a non-psychoactive compound in cannabis that is commonly used to reduce things like inflammation and anxiety.
She said it is not entirely understood why CBD has shown to be so effective in controlling seizures, but it likely is related to how it interacts with neurons in the brain.
Seizures occur as the neurons in the brain that communicate with electrical signals overfire, overwhelming the nervous system.
Sexton said the theory behind CBD’s efficacy in reducing seizures is that it works by “decreasing excitation of the nervous system.”