Ten-month-old Kaitlyn Pogson is living with Dravet syndrome, a rare catastrophic form of intractable epilepsy that causes her to go into hour-long seizures every few days. When this happens, Kaitlyn must be rushed to hospital where she’s administered anti-seizure medication that has little impact and often produces side effects, such as reduced appetite.
Her parents, Barry and Shannon, say there’s hope to end the nightmare their daughter lives with, but they need Health Canada to approve a substance derived from the cannabis plant for clinical trials.
It’s for this reason the Pogsons have launched an online petition aimed at making Health Canada’s office of controlled substances aware of the benefits of Cannabidiol (CBD) on children who are living with a seizure disorder. https://www.change.org/en-CA/petitions/make-cannabidiol-cbd-available-in-canada
Specifically, the petition has three main objectives: to encourage Health Canada to allow the specific strains of cannabis plants needed for CBD production to be imported from the U.S., to allow medical trials to be conducted in Canada, and to expedite the process of accessing CBD.
CBD comes from the flower of the cannabis plant, which is causing stumbling blocks for those advocating for its study in clinical trials. CBD is not legal in Canada, nor is it legal in the U.S. at the federal level.
The substance is produced by soaking the flower in alcohol, which is then boiled off. Olive or sesame seed oil is then added to the remaining residue. The CBD oil mixture can then be administered by stirring it into food.
Barry says CBD treatment could have a huge positive impact on the quality of life for children and adults with seizure disorders.
He says he remains hopeful about CBD eventually becoming a widespread intervention for children with seizure disorders. He points to Dr. Orrin Devinsky of New York University receiving Federal Drug Administration approval to conduct a study on the safety of CBD in children living with a seizure disorder as hope for what’s around the corner.
Epilepsy Ontario executive director Rozalyn Werner-Arcé says that while the organization is not endorsing CBD as a treatment for catastrophic seizures, “as the voice of epilepsy in this province, we believe Epilepsy Ontario has a responsibility to inform people about new research and treatments so that they can make informed decisions with their health-care provider. We do this through stories such as these and through information on topics such as CBD on our website.”
Writer: Deron Hamel
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