Pubdate: Mon, 08 Dec 2014
Source: Denver Post (CO)
Copyright: 2014 The Denver Post Corp
Author: John Ingold


Charlotte Dravet's message to parents is simple: Don't move.

As the namesake for the severe form of epilepsy that afflicts many 
children arriving in Colorado for medical marijuana treatment, Dravet 
said parents often ask her about whether moving to Colorado is worth 
it. She tells them to wait.

"It seems too early to change all the life of a family at this stage 
of the knowledge on this compound," she wrote in an e-mail to The Denver Post.

Studying neurology in the south of France in the 1960s, Dravet worked 
under a professor named Henri Gastaut. Their research led him and 
another doctor to define a different type of rare epilepsy, 
Lennox-Gastaut syndrome, that many families have moved to Colorado to treat.

But Dravet kept encountering kids who didn't fit the Lennox-Gastaut 
profile. Although their seizures also began early in life and came in 
varying forms, their brains' electrical readings looked different. 
And their first seizures came about through different triggers, such as fever.

In a paper published in 1978, Dravet called this new form"severe 
myoclonic epilepsy in infancy." The world would come to call it 
Dravet syndrome. And it was amonster.

The children in Dravet's clinic seized constantly with little muscle 
jerks. Their mental development often hit a wall before their 
preschool years, but their bodies collapsed into old age. They bent 
forward and stuck their buttocks out as they walked. Their feet 
turned out, and their ankles crooked inward. It was as though her 
clinic in Marseille were filled with Benjamin Buttons, the boy from 
literature who ages in reverse.

Dravet understands the desperation that parents feel when looking for 
treatment for their children.

For that reason, she said she hopes CBD - made in pharmaceutical form 
- - will prove to be effective in treating Dravet syndrome. But she 
said there should be more research and a clinical trial first.

"All the rest is uncertain and perhaps dangerous," she wrote.
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