Photo: Erik Putz, Artwork: Caitlin Doherty
The day before Mandy McKnight gave her then six-year-old son Liam cannabis oil for the first time, he had 70 serious tonic-clonic (formerly known as grand mal) seizures. A few times an hour, around the clock, he would lose consciousness while his whole body stiffened and convulsed for about three minutes. On top of the seizures and the exhaustion and disorientation that followed, Liam was knocked out by the side effects of the cocktail of anticonvulsant drugs he was taking several times a day. “Most of the time he would just lie on the couch drooling, basically catatonic,” says McKnight. “It was a nightmare.”
Liam, now eight, has Dravet syndrome, a severe form of epilepsy caused by a rare genetic mutation. He was diagnosed when he started having seizures at nine months old. Before then, he had been a healthy, happy baby. Over the next five years, Liam was placed on 10 different medications and a special diet, but nothing worked: his seizures were becoming more intense and more frequent. Prolonged and repeated seizures (ones that last longer than five minutes and don’t allow for recovery between them) can be life-threatening, and by 2013, McKnight says she and her husband needed to act. “We felt like Liam was going to die if we didn’t do something.” They had heard success stories from other parents of kids with Dravet syndrome who were experimenting with cannabis oil—edible oil infused with strains of medical marijuana with high levels of cannabidiol (CBD), a chemical that may reduce the frequency of seizures. They decided to give it a try. Liam’s paediatric neurologist was skeptical and refused to write a prescription for an unproven treatment, but they were hopeful, excited even. “We felt like it could be life changing for our family,” says McKnight, who has two older daughters.
They were so anxious they travelled from their home in Ottawa to meet with a paediatrician in Edmonton, recommended by friends in their community, who was willing to write a prescription for medical marijuana. Reassured, the McKnights mail-ordered dried marijuana from their assigned licensed producer, and then worked with a Montreal-based medical marijuana dispensary to learn how to turn it into edible cannabis oil. In June 2014, after his inaugural dose of high-CBD cannabis oil, Liam had his first seizure-free day in two years—and then he went 10 more days without seizing. He started walking around, talking and feeding himself. “All of a sudden, he was looking us in the eye for the first time,” remembers McKnight. “I was finally really meeting my kid, who had been living in a fog of medication and seizures.”
McKnight is part of a growing network of parents whose children have rare, difficult-to-treat forms of epilepsy who have exhausted traditional options and are turning to medical marijuana. These parents swap cannabis oil recipes on Facebook, share contacts for neurologists who are willing to write referrals to medical marijuana clinics and spend thousands of dollars a year on specialized plant strains (none of which are covered by drug plans).
The idea of using CBD on kids went mainstream in 2013, after a documentary by Sanjay Gupta, a US neurosurgeon and medical reporter, featured the story of a six-year-old Colorado girl with Dravet syndrome who had experienced a dramatic decrease in seizures while on a daily CBD oil regimen. High-CBD cannabis oil is used commonly, and with great anecdotal success, for kids with severe epilepsy, but there are also reports of parents using it to treat their children’s autism, ADHD and anxiety. So far, most of what parents have to go on are reports from other families, though initial clinical studies of CBD are beginning to build evidence to support what parents using it already know. In 2017, the journal Pediatrics published a review of studies that found medical cannabinoids could reduce seizures in children with epilepsy and effectively treat chemo-induced nausea in kids. And most recently, in 2018, researchers at SickKids Hospital in Toronto found that kids with Dravet syndrome had fewer seizures and better quality of life when taking a preparation that contained both CBD and THC.
But with research still in its infancy and no standardized product they can prescribe, most paediatric neurologists are reluctant to recommend cannabis for kids. In fact, the Canadian Paediatric Society recently released a statement saying that while research is ongoing, cannabis should only be considered as a possible treatment in “exceptional cases.” In the meantime, some desperate parents are forging ahead, accessing cannabis through Canada’s legal medical marijuana program and figuring out on their own how to dose their kids.
Using marijuana to treat children can seem radical—as a recreational drug, it’s still illegal, and some research on heavy-pot-smoking teens suggests it can damage developing brains. Even for parents who now give it to their kids, the idea took some getting used to. “I was never a recreational user,” McKnight says. “If you had told me five years ago I’d be doing this, I would have said, ‘You’re crazy! I’m not giving my kid cannabis!’” Vancouver mom Sherri Brown has given CBD oil to her six-year-old son Quinn, who was diagnosed with epilepsy and autism. She’s become accustomed to fielding questions and criticisms from parents on social media. “Somebody jumped on me in an autism Facebook group and commented, ‘That’s irresponsible,’” Brown says. “The stigma around it being a dangerous illegal drug is going to persist for awhile.”
Medical marijuana advocates are quick to explain that not all cannabis products are the same. Parents of kids with drug-resistant epilepsy choose CBD oil because it’s made from strains of the cannabis sativa plant that are bred to be both high in CBD and very low in tetrahydrocannabinol (THC), the chemical responsible for the stereotypical “stoner” high. It’s important to note that kids dosed with high-CBD, low-THC oil are not getting high—in fact, McKnight and some other parents say that, compared with their kids’ lethargic, stoned behaviour on traditional anticonvulsant pharmaceuticals, when they’re on CBD, they appear brighter, more active and more engaged in the world.
Heidi Valles, a mom of two in Pembroke, Ont., was propelled by stories from fellow parents in a special-needs Facebook group to ask her eldest son’s paediatric neurologist about cannabis. Her four-year-old, Archer, has epilepsy and developmental delays caused by microdeletion, a rare genetic condition caused by a tiny missing part of one of the body’s chromosomes. After trying several anticonvulsants—some with worrying side effects that she says turned her son into “a zombie, with no interest in the world”—Valles hoped medical marijuana would be the answer. But the neurologist immediately shut her down. “She didn’t want to write a prescription or even refer us to a clinic that would,” says Valles, who eventually convinced her family doctor to write a referral. Many paediatric neurologists are uncomfortable prescribing medical marijuana for children because of the lack of scientific evidence to support it as a treatment for epilepsy. “Only research can inform us about who would benefit from CBD, how to prescribe it, and its side effects and interactions with other drugs,” says Elizabeth Donner, a paediatric neurologist and the director of the complex epilepsy program at The Hospital for Sick Children in Toronto. While there is a federal program regulating access to medical marijuana, Health Canada has not approved it as a drug or medicine—which it can only do once a manufacturer has presented a standardized product for review, along with dosing guidelines, potential side effects and clear substantive scientific evidence of the product’s safety, efficacy and quality.
The majority of Donner’s patients are kids with drug-resistant seizures, so she fields lots of questions from parents curious about CBD oil—and even has some children in her care who are currently using it with good results. “Many of the kids I see continue to have seizures despite our best efforts, and I would never begrudge a parent the opportunity to try something they think might be effective,” she says. But she won’t write prescriptions or refer patients to medical marijuana clinics. “I recommend treatments with scientific bases with solid evidence behind them, and we’re not there yet with medical marijuana. I think there is some evidence building for CBD, and I’m very hopeful that soon I’ll be able to know enough about it to prescribe it.”
As parents continue to experiment, science is playing catch-up. Some of the best evidence for CBD oil to date comes from a study just published in The Lancet Neurology journal involving 214 patients aged one to 30 enrolled in the trial at 11 epilepsy centres across the US. In the “open-label” trial (it was not tested against a placebo), patients with severe epilepsy were given a purified form of CBD. The results showed a median 36.5 percent decrease in the frequency of seizures over 12 weeks. The most common side effects included drowsiness, decreased appetite, diarrhea, fatigue and convulsions, while the most common “severe adverse event” was the six percent of patients who experienced prolonged or back-to-back seizures. Although, because this was an open-label trial, it is not clear whether this was the result of CBD or a consequence of the severity of the underlying epilepsy.
The lead authors of this study have also recently completed the first placebo-controlled trial using CBD to treat epilepsy. The results will be published later this year, but Jacqueline French, a professor of neurology and an epilepsy researcher at New York University Langone Medical Center who was involved in the trial, says the initial results are very encouraging. “It’s the first definitive evidence that there is a medicinal effect, suggesting that CBD is therapeutic in epilepsy. It is absolutely what we were looking for,” she says. What’s more, French says that so far, the side effects reported in these CBD studies tend to be the standard side effects researchers have come to expect from any anti-seizure drugs that target the brain and central nervous system.
Prompted by the rising interest in and concerns about using cannabis as a treatment for kids, the Canadian Paediatric Society published its first position paper on the subject in February 2016. The paper concluded that, in view of the very limited evidence on the safety and effectiveness of cannabis oil, it should only be considered on a case-by-case basis as a potential treatment for children with severe and exceptional forms of epilepsy. “Our stance is not that it shouldn’t ever be used, but that it should be used like any other potent drug: with evidence to guide safety and efficacy,” says Michael Rieder, the lead author of the paper and a professor of paediatrics and pharmacology at Western University in London, Ont. “There is very little evidence for use of cannabis for conditions in children except for severe epilepsy. And so, if used for conditions like autism, it should be used with extreme caution, given the potential for adverse events.” He doesn’t recommend it as a treatment option for children with ADHD or anxiety. For kids with epilepsy, Rieder says, neurologists should be the ones guiding and monitoring the use of CBD. “Part of the reason we put out this statement was to stimulate the medical community to think more about who should be leading this,” he says. “The neurology community needs to be engaged and making decisions about whether treatment with cannabis is appropriate, rather than paediatricians prescribing medical marijuana.”
Erick Sell, at Children’s Hospital of Eastern Ontario in Ottawa, is one of a handful of Canadian paediatric neurologists who are open to referring a patient with severe epilepsy to an authorized medical marijuana clinic when other treatment options have failed. His colleagues, he admits, openly question his judgment. “They say, ‘Why are you doing that? There is not enough evidence,’” says Sell. “But from a pragmatic point of view, if I don’t do it, a family doctor might anyway, or they’ll get it somewhere else. And at least I know they won’t get some recreational strain of the plant from the clinics I send them to.” Sell has had some families claim to have seen a reduction in seizure frequency or a change in the type of seizure with CBD oil, but none of his patients are completely seizure-free using cannabis.
Rather than write a prescription, many doctors prefer to refer patients to a specialized medical marijuana clinic. Visits to these clinics are covered by provincial health insurance, and in-house doctors write the prescriptions, which are then filled by an assigned Health Canada-approved marijuana producer (every prescription is tied to a specific licensed producer). Toronto’s Cannabinoid Medical Clinic is a referral-only centre (some clinics will take parents without referrals) that has seen more than 100 paediatric patients since it opened two years ago. Family physician and medical director of the clinic Danial Schecter says most of the children they see have severe epilepsy that has not responded to other medical treatment. When he first meets with parents, Schecter has a frank discussion about the limited scientific evidence for and potential long-term effects of using cannabis in general. He reminds them that “just because this is an oil that comes from a plant, it doesn’t mean it is safer or better than traditional pharmaceuticals.” Most parents go ahead despite the unknowns, because by the time they make it to him, they’ve tried everything else, he says, including other prescription drugs they know have serious side effects and long-term impacts on brain development.
Schecter reports that a majority of his young patients have seen improvements using CBD oil, although in many cases, the number of seizures drops dramatically at first, and then the effects seem to wear off over weeks or months. This is a pattern neurologists also see with many anti-seizure medications; one theory is that the brain builds up a tolerance to the drug. Even as a medical marijuana specialist, Schecter says he finds prescribing cannabis to children “extremely unnerving” and emphasizes to parents the importance of discussing any treatment decisions with their child’s neurologist.
Until recently, when Schecter (and other doctors) prescribed cannabis for a child, the only product parents were able to legally access through the federal Marihuana for Medical Purposes Regulations (MMPR), which came into effect in June 2013, was dried marijuana buds and leaves that would be shipped by mail from an approved producer. And the legal ways to consume it, including smoking it or inhaling it using a vaporizer, were not practical or safe for children. Parents had two options: They could order high-CBD “hemp oil” online from a producer in Colorado and hope it didn’t get confiscated at the border (high-CBD hemp oil is legal without a prescription in some US states but not yet in Canada, where CBD is a controlled substance), or they could turn the dried marijuana they purchased legally with a prescription into an illegal oil that could be given to their kid orally. But in June 2015, the Supreme Court of Canada ruled that the restriction limiting the use of medical marijuana to dry forms violated a section of the Canadian Charter of Rights and Freedoms. Health Canada responded the following month, issuing an exception allowing licensed producers to cultivate and sell all forms of medical marijuana—including cannabis oil and fresh marijuana buds and leaves as well as dried marijuana.
Currently, eight medical marijuana producers across the country are authorized by Health Canada to sell cannabis oil to patients, while several others are awaiting approval. This is a welcome change for parents like McKnight, who has spent one day a month for the past two years transforming mail-order marijuana into Liam’s cannabis oil in her kitchen. This involves baking the dried plants to activate the CBD, then mixing the marijuana with coconut oil and simmering the mixture in her slow cooker for 12 hours. “It smells like you hot-boxed your whole house,” says Valles, who also used to make oil at home. McKnight then strains the hot oily mess through cheesecloth and sends a sample of the oil to a lab in BC, which tests the concentration of CBD and other active chemicals, and sends her a report a few weeks later so she can calculate Liam’s ideal dose (which she gives him four times a day). McKnight looks forward to a time when Liam’s producer can start shipping cannabis oil, so she can pack away her slow cooker for good.
With commercially produced high-CBD oils hitting the Canadian market and trials underway in the US, parents who have been experimenting in their kitchens and administering cannabis against their doctors’ advice are feeling hopeful. “At this point, we’re doing all the work,” Valles says. “It’s nerve-racking to just blindly experiment on your kid.” Since starting on CBD last year, her son Archer has experienced several seizure-free weeks. Not only that, but there have been big improvements in his demeanour and his overall quality of life, so Valles would love to see more money invested in medical research. But clinical trials take years, which McKnight says isn’t fast enough. “Our kids don’t have years—every seizure is a potentially life-threatening event.” She and other parents know cannabis is far from a perfect treatment. Liam, who is now taking only CBD oil and no other medications, still isn’t 100 percent seizure-free. But for now, he’s a happy, functioning kid, says McKnight. “So we take it day by day.”