Why Parents of Children with Epilepsy Are Increasingly Turning to Marijuana

It’s more about desperation, than the desire to be rebellious. (The Power Of Forever Photography/Getty Images)

When Bonni Goldstein, MD, medical director of Canna-Centers, a group of medical marijuana practices in California, prescribes cannabidiol — a compound extracted from marijuana — to children with epilepsy, she always clarifies to their parents that the long-term risks of the compound are unknown. “It wasn’t available 30 years ago,” she explains. Yet, “every single parent has said to me, ‘Well, I don’t know the long-term effects of the medications my child is taking, and the seizures haven’t stopped. I’d like to give my child the best chance possible.’”

Without fail, they accept the cannabidiol, or CBD. In fact, many have come to Goldstein specifically for the drug, knowing already, through Internet forums, that the marijuana extract could equal hope for their sick child.

“To many of these people, it’s just another medication to try,” says Goldstein.

A number of her pediatric patients are non-responders — that is, they’re among the roughly one-third of people with epilepsy for whom conventional medications don’t work. The meds may reduce the frequency or severity of seizures, but fail to eliminate them entirely; some children don’t respond to the drugs, period. “What’s driving people is the option of another medication, even if it’s not been thoroughly researched,” she says. With epilepsy, “it’s very difficult, especially when a child is involved, to live a normal life. Seizures are unpredictable. Imagine being in Target with your child, and your child drops to the floor. Imagine getting a call from school that your child is seizing.”

For Ray Mirzabegian, director of the nonprofit Realm of Caring California, the decision to seek out CBD was an obvious one. Just a couple years ago, his 10-year-old daughter, Emily, was taking four different anti-seizure medications. “Unfortunately, that causes a vegetative state,” he tells Yahoo Health. She’d tried a total of 13 medications, and none effectively controlled her epilepsy: At her worst, she was having 120 seizures a day, at best, 40 to 45 a month. “At that point, [doctors] start retrying some of the medications that failed,” hoping to create a cocktail of several drugs that would work, says Mirzabegian. “We decided that’s not the route to go.”

A couple of years ago, Emily Mirzabegian was taking multiple  medications in an attempt to decrease seizures from epilepsy. (Photo courtesy of Ray Mirzabegian)

As with Mirzabegian, it’s often desperation — not rebellion against convention — that pushes parents to seek medical marijuana for their children. It’s hope that drives them to scour the Internet, searching for any shred of information that may provide relief, even though public opinion is largely against them. Goldstein has seen families move across the country to California just to seek CBD for their children, since marijuana is still a Schedule 1 drug — that is, “with no currently accepted medical use and a high potential for abuse” — under federal law. (Medical marijuana has been legal in California since 1996.)

Related: 10 Ways Pot Can Make You Healthier

Around 2011, recalls Goldstein, cannabis-testing labs became more widespread. This enabled doctors, growers, and patients to determine exactly how much THC (the psychoactive component of marijuana) and CBD (the proposed anti-seizure element) are found in different strains of the drug. As a result, Goldstein says she’s seen a significant uptick in the number of parents seeking medical marijuana for their children with epilepsy — a trend likely accelerated by the 2013 CNN documentary “WEED,” which made “Charlotte’s Web,” a strain of marijuana used to treat epilepsy, a household name among parents of seizure-stricken children.

“Charlotte’s Web is high in CBD and low in THC,” says Goldstein. “Someone looking to get high would be disappointed by its effects.” According to a report in the journal Epilepsia, Charlotte, the little girl for whom the strain was named, has been weaned from all other antiepileptic drugs after 20 months of effective treatment with Charlotte’s Web. Similar varieties of CBD-rich marijuana available in California include ACDC, Harlequin, and Cannatonic. “CBD is taken as an oil under the tongue or swallowed,” Goldstein says. “It’s not smoked.”

Since the documentary’s release, an increasing number of parents have gone public, admitting that their children with epilepsy are being treated with CBD. Just last week, a Eugene, Oregon, family shared their success story with a local news station, KATU, saying they resorted to CBD oil after their young son became suicidal — what they believe was a side effect of his anti-seizure medications. “I have my son again. He’s not this fog of a child. He’s not this angry child. He’s my child exactly,” the boy’s mother, Tanesha Smelser, told KATU.  Like Charlotte’s Web, the oil that her son is taking is low in THC — less than 1 percent — and high in CBD.

It was this CNN documentary that prompted Mirzabegian’s first visit to Colorado — just three days after he saw it — where he met with the Stanley brothers, the growers who produce Charlotte’s Web. “I couldn’t bring anything back, because it’s illegal to transfer the product between state lines,” he says. But he did return to California educated about the potential benefits of CBD, prompting him to buy any CBD-rich product he could find in his state. “Two-and-a-half years ago, a lot of the dispensaries didn’t know what CBD was,” he says. “We bought a lot of stuff — and all of them failed.” (Later testing revealed that the products he’d purchased didn’t truly contain CBD.)

That’s when Mirzabegian started a Facebook page, “The Pediatric Cannabis Group of California,” dedicated to bringing Charlotte’s Web to children with epilepsy in his home state. Within a few months, hundreds of parents had joined — and with the help of the Stanley brothers, Mirzabegian was able to open the California chapter of their non-profit, Realm of Caring, in August 2013.

It’s not just in the United States that parents are becoming desperate. “I have a family who is actually coming to see me from Europe, because they can’t find any relief for their child’s seizures,” says Goldstein. In Chile, a group of about 100 parents have banded together, creating a group called Mama Cultiva, or “Mama Grows,” designed to share information about cultivating marijuana and extracting cannabis oil to treat their children with epilepsy. Many grow marijuana in their own backyards, even though they could be imprisoned for up to 15 years for doing so.

To many in the medical community, these parents are relying, at best, on shaky science. A 2013 Cochrane review of studies examining CBD as a treatment for epilepsy concluded that, due to the dearth of large, high-quality studies, “the safety of long-term cannibidiol treatment cannot be reliably assessed.”

“All we can say is that it appears to be safe for short periods of time,” David Gloss, MD, a neurologist and co-author of the Cochrane review, tells Yahoo Health. “You have to remember this is new — we do not have long-term studies,” adds Goldstein. “There are a couple kids in Colorado that have been on it for over two years and have had no negative side effects.” In a recent Epilepsy & Behavior study, the only side effects of CBD that parents reported in their children were drowsiness, fatigue, and a decrease in appetite; none reported psychoactive effects.

Related: As Pot Smoking Rises, So Do Addiction Concerns

However, as Orrin Devinsky, MD, a professor of neurology at NYU, tells Yahoo Health, “we don’t fully understand the safety of medical marijuana for children.” Even so, he does believe there’s enough data to permit compassionate use in children with epilepsy that can’t be controlled through available medications and diet.

The anecdotal outcomes have been undeniably impressive: In a 2013 survey of parents who belong to a Facebook group devoted to sharing information about CBD for epilepsy, published in Epilepsy & Behavior, 84 percent reported a reduction in their child’s frequency of seizures while taking the drug. And 11 percent said the seizures disappeared entirely.

Since Emily, the daughter of Mirzabegian, started taking CBD, her frequency of seizures has decreased dramatically to about four per month. “It’s allowed us to bring her off meds, and that alone has brought so much of her back — behavior, cognition, speech, learning ability, everything,” her father says. “And there are cases even better than ours. I have patients in San Diego now, several of them, who have been seizure-free for eight, nine months.”

Ray Mirzabegian and his daughter Emily; the number of seizures she experiences has decreased since she began taking CBD. (Photo courtesy of Ray Mirzabegian)

It’s stories like this that continue to compel parents to relocate their families to California and Colorado. “Families ask, ‘Given the dramatic responses documented in the media, how could any reasonable physician deny access to [medical marijuana]?’” Devinsky wrote in a recent commentary in Epilepsia. The problem is, there’s a lack of clarity about how, exactly, CBD might stave off seizures, although a handful of potential mechanisms have been identified, says Gloss. “There’s a whole list of potential targets — they may all work together, or it may be one of them in particular,” he says. “We don’t really know.”

What is clear: Animal studies have shown that CBD works as an anticonvulsant, giving patients and providers hope that a new drug is on the horizon. In fact, GW Pharmaceuticals is currently investigating Epidiolex, a purified form of CBD, as a treatment for Dravet syndrome, a rare form of epilepsy that begins in infancy (the type that both Charlotte and Emily suffer from).

Until the FDA approves a CBD-derived drug, Gloss says he “can’t make a judgment. There have been case reports of people who started taking marijuana and their seizures went away — maybe for those children, there is something there.” However, he cautions, these parents are skirting the methods of conventional medicine. “This isn’t how we typically prescribe medicine in the United States,” says Gloss. “We do things by trials, we see that things are safe, and then they become approved by the FDA. Do the benefits outweigh the risk?  Right now we don’t know. The data is not out there for [CBD] to be used outside of a research trial.”

“There’s certainly not enough research,” concedes Goldstein. “But you have to remember, some of these kids are having hundreds of seizures a day. Any parent would pick up and move for their child if they heard something might work and actually has some scientific basis. People have this vision of medical marijuana as someone sitting and smoking a joint. That is no longer what this is about.”

It’s not just the lack of research that’s creating a roadblock for parents — it’s also the legality of CBD. About six months ago, Mirzabegian opened a California clinic strictly offering Charlotte’s Web, along with training and seminars for parents. “Nine days later, it got shut down, even though the state issued us a license that cost us three grand,” he says. The solution: He’s currently working with an existing dispensary to distribute Charlotte’s Web — a set-up he considers less than ideal. “Dispensaries do not allow minors to come in,” he says. “So I have to tell the parents, ‘Look, you need to keep your children in the car.’ What if the little kid wants to use the restroom? It’s just embarrassing — it sucks.”

In California alone, the waiting list for Charlotte’s Web is between 1,200 and 1,300 people. “Nationwide, it’s 14,000 probably,” Mirzabegian says. However, he’s hopeful that 2015 will be the year he’s finally able to help these thousands of other parents, currently unable to access Charlotte’s Web due to federal laws against shipping CBD across state lines. The Charlotte’s Web Medical Hemp Act of 2014, introduced by U.S. Rep. Scott Perry, R-PA, is due for Congressional review, and if passed, would allow nationwide shipment of CBD products that contain little to no THC.

In addition to tackling the legal side of the CBD issue, Realm of Caring is also working to facilitate “real” research. “We as a foundation are part of clinical trials right now — whoever is coming off the waiting list is part of clinical trial data collection,” Mirzabegian says. “I need the scientific community to buy into this and believe us. We have hundreds of people using CBD now, and they’re reporting data. And the medical community doesn’t like this data — they say, ‘Oh, it’s anecdotal evidence.’ Anecdotal evidence is so underrated — it’s evidence from human beings.”

Your Next Read: How Marijuana Really Affects the Brain