But lack of research, poor industry standards and few doctors willing to prescribe mean parents left to experiment to find consistent dosages.
Mention Taylor Swift and five-year-old Ella’s eyes light up like the Christmas tree in the corner of her Surrey living room.
The tree scrapes the ceiling, and Ella is eager to play with the decorations, but her parents have set up a barricade so she can’t reach the branches.
That’s because the young girl has severe epilepsy and autism, and, although she is nearly six, the cognitive ability of a toddler.
She doesn’t seem to mind, as her attention is soon diverted to a suggestion that she sing a song by Swift, her favourite recording artist.
Yet the strong-willed Ella has other ideas.
“Meatballs,” the bright little girl exclaims, and the family launches into a rousing verse of On Top of Spaghetti.
A year ago, Ella would not have been singing about meatballs, giggling as she sways her hips to Swift, or scribbling in her Dora the Explorer colouring book as she is now.
She would have slept all day, her few precious waking hours spent groggy and depressed because of the medication she takes to control more than a hundred seizures a day.
Ella still takes a cocktail of anti-seizure pills, but her parents, Kim and Rob Turkington, have added two shots per day of marijuana oil, a medicine her parents say has made her more alert, reduced the number and severity of seizures, and allowed her to develop speech and other cognitive functions.
They’re not alone, as more parents, frustrated with failed pharmaceuticals, turn to cannabis oil, ideally one that is low in tetrahydrocannabinol (THC), the psychoactive agent, and high in cannabidiol (CBD), one of hundreds of compounds found in the marijuana plant believed to stop seizures.
The family of Summerland toddler Kyla Williams (an epileptic child who solely relies on CBD oil to stop seizures) has a similar story, as does Simon Fraser University lecturer Sherri Brown.
They share the same caveat: Cannabis is not a miracle drug, but can significantly improve the quality of life for some children.
Like Ella, Brown’s son, five-year-old Quinn Barker-Brown, became much more alert after the family last year began using the same brand Ella takes, called Charlotte’s Web, a strain that has a 28:1 ratio of CBD to THC.
The problem is Charlotte’s Web, considered among parents to be the gold standard in kids’ cannabis, is not available in Canada so they import it from Colorado.
It became legal to buy CBD oil from a licensed producer this summer, after the Supreme Court ruled Canadians have the right to buy derivatives of medical marijuana. However, it wasn’t available until earlier this month when an Ontario company became the first to be allowed to sell cannabis oil by Health Canada.
Many parents still struggle to find a consistent strain low in THC. They buy from unregulated dispensaries, only to find out by trial and error that the product they bought was too high in the psychoactive compound.
No one wants their kids tripping out. That’s why many B.C. parents have in recent months formed a loose network, sharing tips on CBD dosage and which dispensaries offer the most suitable products for children, while they wait for science and law to catch up with demand.
Victoria-based dispensary Trees held a packed seminar in Richmond in September, and plans to hold another in February on Vancouver Island because the response has been “overwhelming,” according to Alex Robb, community liaison for Trees.
Kyla’s grandmother Elaine Nuessler, a pioneer in advocating medical pot for kids with epilepsy, has also been holding seminars over the past year. She has spoken to hundreds of families with children suffering from chronic disease who have expressed interest in cannabis.
While she can only speak to her experience with Kyla’s epilepsy, Nuessler has heard from parents with kids battling a range of diseases, from spina bifida and scoliosis to arthritis and cancer.
Parents desperate
Even a few months ago, most parents would not go on the record to say they were giving their kids cannabis for fear of losing their jobs, or worse, their children.
But so much has changed in a very short time.
Bolstered by a more pot-friendly Liberal government, and outspoken advocates like Nuessler and the Turkingtons, more parents are coming forward and saying, “This works for some kids, now let’s regulate it and provide Canadians with a strain suitable for sick children.”
“At one point it was legal for my five-year-old to smoke dried marijuana but not give her the (CBD) oil. That’s ridiculous. Who is going to give their kid a joint?,” says Rob Turkington. He scoops Ella up in his arms, and gently encourages her to sing Frosty the Snowman.
As he explains how the cannabis oil has “given us our little girl back,” he’s overcome with emotion. Ella is feisty and artistic, he says. She colours, sings, dances, and now attends kindergarten at the same school as her big sister.
The Turkingtons, who say they have never experimented with marijuana themselves, decided to give cannabis a try for Ella after they saw a documentary about the healing qualities of CBD. But it wasn’t easy at first.
“Dosing was horrible. You are on your own,” says Kim. “At first you just rely on Facebook pages with other people doing the same thing, and friends who are doing the same thing with their children. It was quite difficult.”
And it’s not cheap. To import a bottle of Charlotte’s Web costs about $430, and lasts about two months in Ella’s case. And the costs are expected to mount as the family experiments with a higher dose.
Ella’s neurologist at B.C. Children’s Hospital, Mary Connolly, says it is common for anti-seizure medications to fail. Ella, for example, failed seven medications before the family turned to CBD oil. Quinn, who has epilepsy, autism and global developmental delay, switched medications four times.
“Quinn was in a fog and dopey because of the medication and seizures. It got worse when we started meds. He was slamming into walls, he couldn’t stand up,” said Brown, who spoke at the Richmond seminar and estimates between 60 and 100 families in B.C. are experimenting with cannabis for kids.
Connolly does not prescribe cannabis, but she will monitor children in exceptional cases taking CBD.
After Brown received the CBD oil from a Vancouver Island dispensary, they began to see a reduction in Quinn’s seizures. And when they switched to Charlotte’s Web there was significant improved cognition.
“He’s brighter, more attentive, his skills have returned. He will actually say a few things. He started saying ‘daddy’ again and ‘mum’ so that’s really great.”
Still, despite these parents’ success stories, the medical community has taken a stance against prescribing marijuana oil for children.
On Dec. 14, the Canadian Paediatric Society published a position paper on kids and cannabis, saying there is insufficient data to support either “the efficacy or safety of cannabis use for any indications in children,” and may even cause harm in some conditions.
“The potential for cannabis as a therapeutic agent must be evaluated carefully for both efficacy and safety in treating specific pediatric health conditions,” the paper states, and goes on to say that where cannabis is offered in exceptional pediatric cases, physicians should evaluate individuals for efficacy and risk.
Such is the case with Ella. Connolly closely monitors the successes and failures of combining the oil with other medications.
While she notes that Ella is benefiting from the CBD oil, she cautions there is not enough data and she worries that parents will hear anecdotal reports and then mix up their own batches at home.
For this reason, the cannabis for kids seminars make Connolly nervous.
“I’m anxious because it’s like somebody getting the recipe for medication and going home to their kitchen and making it up. It’s kind of unbelievable. Can you imagine making up a chemotherapy and making it up at home for kids with cancer?
“I understand there is a kid with a tumour and the parents are making up a product that is high in CBD and THC and it’s being distributed among parents,” she said.
“I just caution parents that their data is poor. There are some children who might benefit. People are going to go ahead and so I just want them to do it safely.”
Robb and Nuessler, who both bring in physicians to speak to parents at their seminars, argue that the sessions are an important way for parents to discuss where scientists are at with research, and to create a community so they don’t feel so helpless.
Most provincial health authorities, including B.C., also do not support the use of medical marijuana for pediatric patients.
B.C.’s provincial health officer Dr. Perry Kendall declined to give an interview on the topic, but said, in an emailed statement, that he cannot give medical advice to parents on treating their children with cannabis oil.
“All I can suggest is that they look for a physician with experience in this area of medicine. I empathize with parents’ dilemma and I endorse the need for scientific trials to determine if and for whom cannabis derivatives will provide assistance.”
Dosing dilemma
Dosing has been a major setback for families. Physicians may authorize the use of cannabis for children but they don’t prescribe a dose so parents are left experimenting, and many have turned to Nuessler for advice.
After taking on the role of family advocate for Kyla, along with her husband, a retired RCMP officer, Nuessler went down to Colorado to find out how they make Charlotte’s Web.
She was impressed with how it is grown organically, hand-picked, and tested three times in a lab for purity — something she says is hard to find here in B.C.
Kyla, who takes 2.1 mL of Charlotte’s Web, three times a day, went from 300 seizures a day to virtually none. She’s also starting to take another CBD oil even lower in THC called Evolution, from the same Colorado company that supplies Charlotte’s Web. Nuessler said the ratio of the new product is 46:1 CBD to THC.
Her success story has been widely reported in the media, and Kyla’s response to cannabis has become a beacon of hope for other B.C. families.
Brown has been doing her own monitoring of Quinn, with help from Nuessler, starting out with a very small amount and recording how it reacts with different meds.
“It’s not a magic bullet. It’s another med and they all can be contraindicated. So you have to be careful because they don’t always interact well together and you have to take the data, and try to figure out what is happening with behaviour, sleep, food, seizures and try to track all of those indicators of well-being,” said Brown.
Quinn has seizures similar to Kyla’s, called absence seizures, but he also has partial complex seizures. He sees flashes of light and colours and it makes him quite agitated.
“As a parent, you worry about exposing your child to risk. At the same time parents are much more educated about CBD than ever before,” Brown said.
Before the seminars, and the proliferation of dispensaries and compassion clubs, desperate parents would hit the streets and pubs to find drug dealers, feeling guilty as they handed over cash to dodgy dope dealers.
Now they can go into one of hundreds of dispensaries around the province.
But Nuessler says that doesn’t mean parents will be able to find a suitable product.
While Nuessler is an advocate for dispensaries, she says unless parents have done their research or spoken to other parents with insight into the best products, they don’t know what they are buying. The amount of THC on the label may be much higher than advertised.
“Many people don’t realize how important it is to have a consistent and high quality product. When you are using cannabis on a child, they are so sensitive and each child can have a different result,” she said.
In Vancouver, there are two dispensaries that Brown will recommend to parents, though she would not disclose where they are located.
“Dispensaries range from totally sketchy to the ones that I would say know what they are talking about,” she said.
In Canada, marijuana continues to be regulated as a controlled substance under the Controlled Drugs and Substances Act. Medical marijuana dispensaries or compassion clubs, not licensed by Health Canada, are illegal.
As for Ella’s family, they’d like to see a cannabis oil developed for children that’s easier to access in Canada, and more affordable, perhaps even covered under B.C.’s medical plan.
“We’re way behind the United States in research and we need to catch up,” says Rob.
“This is not a bunch of hippies taking drugs … These are scientists, this is science and we need it for our children.”
News Moderator: Robert Celt 420 MAGAZINE ®
Full Article: Canada: Parents Find Success Treating Kids’ Epilepsy & Autism With Cannabis Oil
Author: Tiffany Crawford
Contact: The Vancouver Sun
Photo Credit: Tiffany Crawford
Website: The Vancouver Sun
