Mandy McKnight secretly cries, often while driving alone.
The car, she suggests, gives her an opportunity to reflect, to imagine a life where her six-year-old boy didn’t have prolonged seizures, to wonder what the future will bring for a child at constant risk of injury, to wonder if this continuing state of emergency will last forever.
“You’re always anxious. You’re always waiting, You never relax,” says Mandy, who is from Torbay, but lives in Ottawa. “You’re always anticipating a seizure, no matter what. ... You’re constantly on edge.”
Liam’s seizures are caused by Dravet syndrome, a severe form of epilepsy. They are severe and plentiful — he has had 70 in one day. He wears a helmet in case he falls and bangs his head.
He forgets and often has to relearn skills like walking and holding a fork.
And the years of constant seizures are taking a physical toll on the boy, who weighs about 45 pounds.
“He’s aways at risk of permanent damage or death from seizures,” Mandy says.
But there is hope — medicinal marijuana.
Liam is one of the youngest licensed users in Canada.
Mandy and her husband, Dave McKnight, got the idea to try Liam on cannabis after meeting a father who was treating his son that way during a Dravet syndrome conference in Minnesota in 2012.
Knowing something had to be done to make Liam’s life better, there was zero hesitation. To people who might question their decision, or suggest the McKnights wanted to get their son high, Mandy is quick to shoot back, saying Liam has been on a cocktail of drugs that affects his behaviour since the age of nine months.
“If people think these kids aren’t high already, they are delusional,” she says. “If the cannabis — it’s non- pyschoactive — is going to give him an opportunity to be a normal kid, to not be drugged up on all these other medications, (we’re going to try it).”
Liam’s neurologist wouldn’t write the prescription so they searched from St. John’s to Vancouver to find a physician who would.
With the help of another Dravnet family, they finally found one in Edmonton. Liam received his licence to use marijuana last July at age five.
He began with a small amount of extract at bedtime. The results were immediate, with the duration of his seizures dropping from three or four minutes to 20 seconds or so.
Recently, things have gotten even better.
In April, after federal guidelines changed, the McKnights registered their son with Bedrocan, a licensed supplier of medicinal marijuana.
Liam started taking a new extract in June and went 10 full days without a seizure.
And so a kid who missed most of kindergarten this year was able to make his graduation, and the McKnight family — which includes Liam’s two older sisters — did things many people take for granted.
There were trips to the beach and park, and Liam even tried tubing.
“Tubing!” Mandy says. “I couldn’t believe it.”
The seizure-free period didn’t take away the worries, but it did ease the pressure on everyone, especially Liam.
He was different kid.
The positive experiences have continued. Liam’s seizures have lessened in both duration and frequency, and he was able to go horseback riding last weekend.
“It’s just giving him an opportunity to live, to not just be home seizing,” Mandy says of the marijuana extract, which is administered in a coconut oil base.
But as much of a godsend as it is, the extract has become a frustration for the McKnights.
Federal law permits suppliers to sell medicinal marijuana in its pure form, meaning it expects Liam — and even younger users — to inhale it through a vaporizer, or to smoke it.
Licenced providers can’t sell an extract, so Mandy has to go through a lengthy and illegal process to get Liam’s medicine made.
A package of marijuana arrives at her door and she sends it to a guy with the Medical Cannabis Access Society in Montreal.
He creates the extract and then Mandy has to send samples to a lab in British Columbia for testing to see if it’s good to use.
“Liam could be getting too little or too much,” she said.
The predicament puts Liam’s access to quality medicine at risk and Mandy fears it could result in a return to more and longer seizures.
“Life would be great if we could get it in the oil form from a licenced producer,” she says.
She’s unsuccessfully lobbied provincial and federal politicians in Ontario to make that possible. She says marijuana producers have pushed for the same thing.
“It’s just frustrating,” Mandy says. “I just wish people would use their common sense, get past the issue and just think about it. You’re asking kids — it doesn’t even make sense — to smoke or to vaporize. If you just saw what we did — all we do is put oil on a spoon when he takes it. … It’s like sending someone who has a heart condition a bunch of powder and telling them to go figure it out.”
It’s time for decision-makers to find a better way for kids like Liam and others whose health might benefit from a cannabis extract. It would help prevent so much suffering for the children and their families, and perhaps parents like Mandy wouldn’t find themselves crying in their car when they get a rare moment alone.
As she rightly points out, it’s an issue of compassion and not drugs,
The McKnights — who have gotten a lot of support from family and friends in Torbay — don’t know how long Liam will be with them. They live in the moment and promise to surround their son with love and — in Mandy’s words — “keep him happy beyond measure.”
“The key to his happiness is having control of his illness,” she says. “The longer he goes without seizures the more he can learn, the safer he is, the more he can do. If he’s just home seizing all of the time, what’s the quality of life there? There is none.”