Researcher urges caution to parents using cannabis to treat kid neurological issues

Parents like Mandy McKnight say that cannabis has been life-changing, even life-saving, for their kids, but there's a lack of established medical evidence.

Parents using prescribed and non-prescribed cannabis to treat seizures, cancer

Dave McKnight plays with his son Fin as his older son Liam plays and his wife Mandy McKnight looks on at their home in Ontario. (Sean Kilpatrick/Canadian Press)

Mandy McKnight's son Liam has Dravet syndrome, a form of epilepsy that causes him to have up to 70 seizures a day.

McKnight began giving the 10-year-old cannabis products about five years ago.

"He'll always have Dravet syndrome, but it has definitely provided him with a quality of life that other medication failed to do," said McKnight, who is originally from Torbay but lives in Ottawa.

Since that time, Liam's seizures have nearly stopped — his mother estimates they've been reduced by 90 per cent.

Unclear dosages and ingredients

Doctors have said they're hearing from more and more parents who have purchased cannabinoid products online and believe they are helping their children, but still have questions about appropriate dosage and formulas, said Lauren Kelly, a clinical researcher with a PhD in pharmacology working at the University of Manitoba.

Mandy McKnight makes cannabis oil from dry marijuana and avocado in a Crock-Pot. (Waubgeshig Rice/CBC)

Parents are self-prescribing for a variety of conditions in children including epilepsy, migraines, autism and brain cancer, said Kelly, who co-authored a commentary for the Canadian Medical Association Journal titled "Clinical trials needed to study cannabinoid use in Canadian children."

There are different types of cannabinoids, she said, and they have different effects. But because many of the products are unregulated, it's often not known exactly what dosage a child might be getting.

"We don't know what the manufacturing quality actually is. We don't really know how much active ingredients are really in these products," she said.

Kelly's team is working with two clinical trials looking to identify appropriate dosages for children with epilepsy, which she says is just one step toward their safer use for kids.

"Even once we identify what dosage or range of doses works for children, we still need to make sure that the products actually contain that amount of the active ingredient."

Up to 70 seizures a day

McKnight's family heard about cannabis oil as a potential treatment for Liam's condition through a family they met in the U.S. at a conference on Dravet syndrome.

"It took us about a year of trying to find someone who would help us, because everybody kept saying no," she told CBC's St. John's Morning Show. They finally found a pediatrician who would authorize the use.

Cannabis oil like this has helped Liam, who has Dravet syndrome, his mother says. (Justin Tang/Canadian Press)

There have been challenges with dosing and finding the right strain for Liam, but the rewards have been worth it, she said.

Before she began to give Liam cannabis oil treatments, his day was largely governed by seizures, McKnight said.

"Before we could access the cannabis oil he was having up to 70 seizures a day," she said.

The seizures would last three or four minutes. Then Liam would spend 10 to 15 minutes recovering, which usually meant sleeping, before another would begin.

"He hadn't had a seizure-free day in about two and a half years before we tried the cannabis oil."

Lack of clinical evidence

Kelly said there have been a few small case studies on the use of cannabinoids in children, but a lot of what is known so far comes from parents like McKnight.

"If you're a parent and you're desperate and your child is not responding to therapy, this may seem like a relatively safe and effective alternative treatment," she said.

But the lack of established evidence can make physicians wary of prescribing medical marijuana to children.

"They don't have the same kind of evidence that they would if they were prescribing another medicine so it's understandable that there are a lot of physicians that are opposed to prescribing these products," said Kelly, who recommends following your physician's advice.

When Liam was authorized to use cannabis for medical use, he was one of only a few children McKnight knows of in Canada who had that permission.

Even after getting approval, the family had to fight to access the drug in a form that didn't have to be smoked. The family was an intervener in a Supreme Court of Canada case that challenged the law and won, making cannabis oil available for all patients in Canada.

Should medically prescribed cannabis remain?

There needs to be advocacy to support better research into the use of cannabinoids in children, Kelly said.

"We need to hold these cannabis health products to the same standard that we would any other medicine that's being used in children."

McKnight agrees more research is needed, but disagrees with the Canadian Medical Association's position that there's no need for cannabinoids to be prescribed by physicians once cannabis is legalized in October.

If we thought our son was going to die, what long-term side effect of cannabis can be worse than death?- Mandy McKnight

She said the medical system is the way pediatric patients like her son can safely access the cannabis they need. She's worried that ending that practice will also mean the end of any interest in medical research on the use of cannabis.

Mandy McKnight estimates Liam's seizures have been reduced by about 90 per cent since he began taking cannabis oil. (CBC)

Even with the reality of the lack of research, waiting until more research is done won't help children like her son now, McKnight said, or the others in Canada who are being helped by cannabis.

"These kids are extremely sick and in some cases some of these kids are dying and cannabis is our last hope. Our argument to our medical team was that if we thought our son was going to die, what long-term side effect of cannabis can be worse than death?"

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With files from The St. John's Morning Show