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She promises him that his little sister, Sydney, will dance if he takes his medicine. “I’m not doing it,” Sydney says.
A voice tiptoed back to her with the peanut-butter-mouth slur of a child’s early words: “Wuh moh minuh.”
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Today, there are 427 children under 18 on the state’s medical marijuana registry, including 13 under 2 years old. That total number is up from just 60 in August 2013, when the documentary aired. More arrive every month.
“You know you’re fighting for your child,” she said. “You just do whatever it takes to get what you need for your child. People slack off. You have to stay on top of them.”
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No agency thoroughly regulates the treatment providers, beyond basic licensing. No rules govern the right formulation or dosage of the marijuana extract at the core of the treatment. No studies conclusively document the side effects.
At the North Carolina Children’s Hospital in Chapel Hill in May, Dr. Robert Greenwood hustled into the meeting room wearing a tie covered with Dr. Seuss characters.
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Myoclonic seizures Brief seizures characterized by little muscle jerks. Preston’s eyelid flutters are a myoclonic seizure.
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Dravet isn’t like other epilepsies.
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Even as families flock to the state, few doctors here condone the use of marijuana to treat seizures. And that means the very people on whom families depend for medical advice are often silent when it comes to critical questions about the new treatment.
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It wasn’t until Preston was 6 years old that doctors finally put a name to his con***ion: Dravet syndrome. And in some ways, that was worse than not knowing at all because it meant there was no cure to find.
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“Beautiful,” another wrote. “So beautiful.”
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