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In Colorado, Thousands on Wait List for Marijuana to Treat Childhood Epilepsy

Treatment for Childhood Epilepsy Heats up Medical Marijuana Debate
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The United States government classifies marijuana as an illegal drug, but nearly half the states have legalized the substance to some degree.

Proponents say some strains of marijuana might have exceptional health benefits for treating pain or inflammation in chronic conditions such as cancer, multiple sclerosis and epilepsy.

A strain of medical marijuana developed in Colorado is reputed to reduce seizures in childhood epilepsy and it's made a big difference in the life of Maggie Selmeski.

Making progress

The two-year-old girl can finally hold up her head on occasion, something most children achieve by the time they're four months old.

“They’re inch-stones [small steps] in the big picture, but they’re milestones for our children, for our special needs kids,” said Shawn Selmeski, her father.

Maggie has a rare form of epilepsy that can trigger hundreds of seizures in a single day. During her first year of life, her parents frequently rushed her to the hospital, where doctors administered medications that probably saved Maggie’s life, but had side effects.

“They said, 'Well, hopefully, when we give her his drug, it will stop her seizures, but it could also stop her heart and her breathing,' and so they had the crash cart outside her room, ready, in case that happened," Shawn said. "It became normal."

Daily medications and their accompanying side effects

“They drugged her up," Shawn said. "She would sleep for 20 hours a day, and wouldn’t make a noise all day long. They sedated every part of her body.”

Seeking anything that would be less toxic, Maggie's mother, Rachael, learned about a plant that has been credited with reducing seizures for hundreds of years. That plant is cannabis, also known as marijuana.

“Maggie was three months old at the time. I brought it up to Shawn, and I was so naive to not even realize that it was marijuana," she said. "Shawn was like, 'No, we’re not giving our child weed.'”

Charlotte's Web

The Selmeskis rejected marijuana because the U.S. government lists it as an illegal drug, as does their home state of Tennessee. But as Maggie turned one year old, still on medications, and worse than ever, her parents began to rethink their options.

They learned that a grower in Colorado - where marijuana is now legal - had developed a strain that virtually eliminated epilepsy for some children. It's called Charlotte's Web, after a little girl who was helped by the drug. The Selmeskis consulted their Tennessee doctors, who urged them to head West.

After moving to Colorado, Rachael and Shawn began giving Maggie a few daily drops of oil containing Charlotte’s Web.

Instantly, they say, her digestion improved. She began gaining muscle tone and was smiling every few hours instead of once every month. These days, she’s even trying to roll over. And while things aren’t all right for their two-year-old daughter, Shawn says it’s no longer a constant crisis.

Legal ramifications

But if they ever cross state lines with Maggie and her daily dose of marijuana, they could be arrested.

“I have elderly parents, Rachael has a grandmother who’s close to the end, and Maggie can’t see them," Shawn said. "They have to come here, and for some people, that’s just not feasible.”

While more than half the states have decriminalized medical marijuana, possession remains a federal crime, and the rules for crossing state lines are murky, which presents a serious problem for the 200 families with epileptic children have moved to Colorado for Charlotte's Web, according to the drug's developer, and the thousands more who remain on the waiting list.

The Charlotte’s Web strain they are using is very low in the hallucinogenic chemical THC, but may be the highest in the world for Cannabidiol. Better known as CBD, the chemical has anti-inflammatory properties.

Limited research

Neurologist Edward Maa, at the University of Colorado, would like to compare this plant-based medicinal to approved epilepsy drugs. But federal law strictly limits marijuana research, and Maa says it’s time for the government to let scientists study Charlotte’s Web.

"I look at this as one more arrow in my quiver to help my patients," Maa said. "I don’t care about the political implications or any of the emotional baggage that it carries. If it works, I’d like to be able to use it.”

The Selmeskis agree that it’s time to reframe the marijuana debate. They are hopeful that growing support for Charlotte’s Web will lead to reforms at the federal level.