Sidebar published December 8, 2014 Neurologist CAUTIOUS oN OIL’s BeNeFITS STORY 7 BY JOHN INGOLD Charlotte Dravet’s message to parents is ferent triggers, such as fever. simple: Don’t move. In a paper published in 1978, Dravet called As the namesake for the severe form this new form “severe myoclonic epilepsy in of epilepsy that afflicts many children ar- infancy.” The world would come to call it riving in Colorado for medical marijuana Dravet syndrome. And it was a monster. treatment, Dravet said parents often ask The children in Dravet’s clinic seized con- her about whether moving to Colorado is stantly with little muscle jerks. Their mental worth it. She tells them to wait. development often hit a wall before their “It seems too early to change all the life preschool years, but their bodies collapsed of a family at this stage of the knowledge into old age. They bent forward and stuck on this compound,” she wrote in an e-mail their buttocks out as they walked. Their feet to The Denver Post. turned out, and their ankles crooked inward. Studying neurology in the south of It was as though her clinic in Marseille were France in the 1960s, Dravet worked under filled with Benjamin Buttons, the boy from a professor named Henri Gastaut. Their re- literature who ages in reverse. search led him and another doctor to de- Dravet understands the desperation that fine a different type of rare epilepsy, Len- parents feel when looking for treatment for nox-Gastaut syndrome, that many families their children. have moved to Colorado to treat. For that reason, she said she hopes CBD But Dravet kept encountering kids who — made in pharmaceutical form — will didn’t fit the Lennox-Gastaut profile. -Al prove to be effective in treating Dravet syn- though their seizures also began early in drome. But she said there should be more life and came in varying forms, their brains’ research and a clinical trial first. electrical readings looked different. And “All the rest is uncertain and perhaps their first seizures came about through dif- dangerous,” she wrote..