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Medical Marijuana: The Last Hope for Sick Children

Desperate for help, families take extraordinary steps to help children wracked with seizures.

Doctors See the Need continued...

Because pot remains illegal under federal law, even in a state like Colorado where it is legal, no federally funded hospital or university will conduct research with it.

The lack of study concerns Edward Maa, MD, an epilepsy specialist in Denver. He's also a board member of the Epilepsy Foundation of Colorado, which has publicly urged caution regarding CBD treatment.

"The influx of patients is unfortunately something that the system is not bearing very well and probably should be proceeded with caution if at all," he says. Maa is concerned about the effects on children of families uprooted or living apart and of parents stopping other medications too soon.

"The foundation is very supportive of researching the anecdotal reports that are so shocking and exciting," he says.

He wants to see multiple scientific studies, though, with control groups and placebos, before endorsing marijuana as a seizure treatment. But he acknowledges the difficulty in getting the FDA to support research.

Gedde and Maa co-authored a report in December to the American Epilepsy Society, describing some of the successes. But it was not the sort of rigorous scientific research that is required for FDA approval.

"It's sort of like a popular movement and not scientifically established, so I see where Dr. Maa is coming from," Gedde says.

The FDA recently approved research on a purified form of CBD for children with epilepsy. Orrin Devinksy and Daniel Friedman of NYU's Comprehensive Epilepsy Center, are involved in the research. The doctors wrote an opinion piece in the New York Times that urged the government to remove some of the restrictions around studying marijuana so doctors can better understand its risks and benefits.

"The truth is we lack evidence not only for the efficacy of marijuana, but also for its safety," they wrote. "This concern is especially relevant in children, for whom there is good evidence that marijuana can increase the risk of serious psychiatric disorder and long-term cognitive problems."

The call for rescheduling marijuana has been echoed by the Epilepsy Foundation, a national group, which said, "An end to seizures should not be determined by one's ZIP code." 

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