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Nothing stopped her seizures until she found cannabis: Why the DEA just approved CBD drug for rare form of epilepsy

Amanda Reuther ran into the room where her husband was with their infant daughter, Paeyton, when she heard him yell, “She’s choking!” Paeyton’s arms and legs were twitching in unison, and her eyes rolled back into her head as the skin of her face turned a dull gray color.

That was Paeyton’s first seizure when she was one-year-old, and it was the beginning of a four-year-long odyssey of doctor visits, medications, sudden seizures, hospitalizations and near constant worry and helplessness for their family. This June, Paeyton, who is now six, began taking CBD oil after she had 11 seizures in 10 hours.

The only CBD drug that’s been approved so far is for two forms of childhood epilepsy. On Thursday the Drug Enforcement Agency approved GW Pharmaceuticals’ antiseizure drug, derived from cannabis. The FDA approved the CBD drug back in June.

GW Pharmaceuticals cannabis laboratory

Source: GW Pharmaceuticals

There are about 400 chemical compounds found in marijuana, also known as cannabis. The main active ingredient is THC, which is psychoactive, while the second is CBD, which is not. The hope is that CBD can provide all or many of the well-documented health benefits of marijuana without getting people high, but epilepsy is the only approved-use case.

The drug is indicated to treat patients two years old and older with Dravet Syndrome and Lennox-Gastaut Syndrome, rare forms of epilepsy that emerge during childhood and can be difficult to treat. It does not contain tetrahydrocannabinol, or THC, the psychoactive compound in cannabis that makes people high.

A variety of health claims involving CBD as a catch-all wellness product have been made, but it is only for treating epilepsy that is well established, said Richard Miller, author, professor of pharmacology at Northwestern University and narcotics expert. Beyond that, we’re not 100 percent sure what CBD does, Miller said.

Turning to CBD in desperation, and finding hope

Paeyton was diagnosed with epilepsy when she was one, but she was also born with a separate, extremely rare genetic condition. Because her case is so complicated, doctors aren’t always sure of the best way to treat her. She’s been on medication for years, but she had been having “breakthrough seizures” about once a month.

“It just feels like time almost stops when it’s happening, because you just don’t know what’s going to happen and it’s just surreal. You just get pulled out of real life. Especially when you see this happening to your child. You feel helpless,” Amanda Reuther said.

The Reuther family has gone every six months since the first seizure to visit a neurologist. The doctor was forced to keep increasing Paeyton’s dose each time to keep up with her increasing tolerance for the drug. Reuther said her 23-year-old sister had a seizure and was prescribed the same medication her daughter takes; her sister takes 1,000 milligrams twice a day, while her 40-pound daughter takes 900 milligrams twice a day.

“She’s kind of getting to her max, and if she maxes out, we’re going to have to add a second medication,” Reuther said. “With every seizure, she gets closer to that maxing-out point,”

The medicine Paeyton takes currently has very few side effects, but Reuther was worried that if her daughter was forced to begin taking another, it would “destroy her body entirely.”

“That would be something she would be, you know, dependent on for maybe the rest of her life,” Reuther said.

So when Paeyton had the 11 seizures in 10 hours, her mother was scared and desperate for a solution. She didn’t want to take her daughter to the emergency room where her genetically weakened immune system makes her highly at risk for infection and where they’d prescribe her more powerful drugs, but she had to do something.

Amanda had watched a documentary about how CBD could help epileptics and had even discussed it with her doctor, so when a friend offered to drive over to her house with some, she said yes. She gave her daughter three drops of the oil along with her other medication.

“California is pretty liberal when it comes to marijuana, so I felt comfortable after talking to her doctor,” Amanda said.

Paeyton hasn’t had a seizure since that day.

Broad wellness claims for CBD on shaky ground

CBD is considered a Schedule 1 drug because it comes from marijuana, which the DEA defines as having no currently accepted medical use and a high potential for abuse. So it’s extremely difficult for researchers to get funding for their work. The studies that have been done, however, have produced hopeful results. Possibilities include that CBD could be used as an antiinflammatory and for people with chronic pain, that it could help people quit smoking or taking opiates, that it could treat people with schizophrenia or PTSD and that it could even have anticancer effects. But not much is known for sure, and scientists don’t even understand fully how your body uses CBD.

Until researchers conduct large, double-blind studies on CBD and its effects — the gold standard of scientific research — we won’t know for sure that CBD does the things researchers think it may, Miller said. We also won’t know what the proper doses would be or whether there are any side effects.

But that’s not stopping wellness companies from cashing in on CBD, a chemical from marijuana, or pot stocks such as Tilray from going up on recent headlines, including the DEA approval on Thursday and a report that Coca-Cola is flirting with the idea of making a CBD drink. Many wellness companies already are selling CBD products with soothing flavors and aromas, like lavender, mint and eucalyptus, and telling buyers it will relax them and make them think more clearly.

Yasmin Hurd, director of the addiction institute at Mount Sinai, who has studied marijuana for more than 20 years, said she has noticed a fad lately where companies are putting CBD into every product they can. In some of those cases, she said it is likely that the only affects some people are feeling are in their heads. “Perhaps you’re just increasing the price of your coffee,” Hurd said.

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