Medical Research: Parents of children with severe epilepsy are turning to medical marijuana in a desperate attempt to find relief and a life for their kids. Meanwhile, the medical community grapples with how to deal with the growing popularity of an unproven cure.
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Today's Parent: 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. But with research very much in its infancy and no long-term studies or 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...
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