At seven months old, Kyla Williams was diagnosed with interactive seizure disorder at BC Children’s Hospital in Vancouver.
After being prescribed countless pharmaceuticals, steroids, and following a doctor recommended ketogenic diet, Kyla’s condition continued to deteriorate, seizing up to 300 times a day as her body rejected the treatment.
Concerned they were running out of options to help Kyla, her paediatrician asked her family if they had thought of trying cannabis oils to calm Kyla’s painful and debilitating seizures.
Since then, Kyla’s grandmother Elaine Neussler has become a voice in the fight for the paediatric use of cannabis oils to treat seizures.
“I’m just a grandma who never had any kind of dealings with marijuana in my past,” said Neussler. “My husband, Chris, joined the RCMP very young. Even when I was in high school I stayed away from it, somehow…Maybe because I didn’t like the smell.”
With no other pharmaceutical options, the family was able to obtain Canadian CBD oil products and administer them to Kyla.
“Within 20 minutes of taking that oil, the seizures stopped… It was amazing,” Neussler said.
Kyla went from experiencing hundreds of seizures daily, to going up to three weeks without an episode.
Overjoyed, Kyla’s team decided to slowly wean her off other medications.
Sadly, the THC content in a second batch of oil received was too high for Kyla to handle. The oil caused her to seize regularly, although still much less compared to other medications.
Elaine and her family continued their research on CBD oil as a treatment for children with epilepsy and discovered the Stanley brothers of Colorado and their Charlotte’s Web hemp oil.
Last July, CW Botanicals began exporting its the oil, as a dietary supplement, to Canada and the family decided to give it a try.
For over a year, Kyla’s seizures were greatly reduced and she experienced days and weeks without disruption as well as better cognitive function and seizure control.
In March, four families, including Kyla’s, had their shipments of oil seized at the Canadian border.
The reasoning being that the oils are marijuana products or derivatives.
“Unfortunately, everyone just calls it medical marijuana or cannabis and just lump it all together,” said Neussler. “There’s no way of doing preliminary tests. When they test it, it’s going to show up as marijuana, but a lab test will show it’s less than 0.3 per cent THC. You can get lab results on the CW Botanicals website for that batch number that can prove it, but they intercepted it before we could give them any kind of proof.”
Since having their medicine seized, Neussler has had Canadian licensed cannabis producers calling to offer their oil products but the grandmother said she is hesitant to accept because of a lack of scientific study and testing on their products.
“There is no quality control out there. I have to go with people I’ve trusted,” said Neussler.
Kyla’s family has been in contact with the Haley Rose Foundation and looked into using the Haley’s Comet CBD oil, but the THC content is also too high for Kyla.
The family is concerned with Health Canada regulations and upset that the government is not listening to patients using cannabis.
Neussler said putting addictions specialists on the government’s cannabis “task force” instead of medical professionals and patients seems like the wrong direction.
“It concerns me if our government has skeptics, all they have to do is a little bit of research, watch the Sanjay Gupta documentaries and read about the Endocannabinoid System,” she said. “Once you start reading, it all makes sense that it works.
“You prove to me that what Kyla has and her response to the oil is not a placebo effect. There is no way a child can have the feeling of a placebo effect.”
Neussler has started a website, Medical Cannabis For Sick Kids, which offers a wealth of information and resources for parents who would like to know more about how cannabis can help them or their family.
The site is raising money to assist families with medicine, education, and scientific research. The website is also associated with The Realm of Caring, a group started by families that have moved to Colorado as medical refugees, as CBD remains a Schedule 2 drug in Canada, and is legal in the US.
Justin Trudeau and the Liberal government have an opportunity to help Kyla, and children like her, to live their best life despite their illness. Yet, we are left waiting for them to act on this issue.
It is time to look past the ‘reefer madness’ and the stoner tropes to see all the good that this little flower can do.