Parents, politicians pushing for sick kids be treated with medical marijuana

In Advocacy, Children, Feature Stories by Dr. Tim Sandle, Ph.D.

Medical marijuana and sick children may seem like an likely fit; however, the treatment has been recommended for nine-month-old Kaitlyn Pogson of Toronto.

Physicians have suggested a cannabis oil extract may help alleviate the extreme seizures that have afflicted Kaitlyn since birth. Her parents are taking notice. In an exclusive interview with The Medical Marijuana Review, Kaitlyn’s father, Barry Pogson, an e-commerce professional, discussed his daughter’s condition and how medical marijuana might make her life more comfortable.

According to Barry, Kaitlyn began to experience “prolonged seizures” when she was only a couple of months old. After a few more months, the “frequency and duration of these seizures increased” and Kaitlyn’s condition worsened. Naturally troubled by this, Barry and his wife Shannon, a 30-year-old school teacher, took Kaitlyn to see a doctor. She was diagnosed with Dravet syndrome, a rare and catastrophic form of epilepsy.

Kaitlyn was symptomatically diagnosed at four-and-a-half months old and clinically diagnosed at seven months old, explains Barry, 31. As the seizures intensified, Kaitlyn was taken to The Hospital for Sick Children in Toronto.

Initial treatments, including the anti-anxiety drug phenobarbital, proved unsuccessful and Kaitlyn now continues to suffer from regular seizures. Worse still, Barry says, Kaitlyn “has stopped eating due to the side effects of her medications,” resulting in her being fed through a tube.

Worried by the lack of efficacy of prescribed medications, the Pogsons are also concerned about the side effects of these drugs, which include loss of appetite, impaired ability to speak or walk, ataxia, gait, cognitive decline, blindness, and brain damage. More worrying still, substances such as phenobarbital are also habit-forming.

Kaitlyn’s parents were troubled by the ineffective treatments, so they looked around for alternatives and came across news reports about novel medical marijuana approaches for Dravet syndrome in the U.S. Some experts have suggested, with support from case studies, that a strain of marijuana low in tetrahydrocannabinol (TCH) can alleviate seizures when administered orally as an oil (a non-psychoactive extract). Basically, the oil doesn’t offer the “high” associated with marijuana. Cannabidiol (CBD) oil is obtained from the cannabis plant by solvent extraction, and contains the cannabinoids present in the natural oils of cannabis flowers and leaves.

Barry says, “On CNN, we found out about CBD before her clinical diagnosis, about a boy in California with Dravet whose father used it in desperation. It was still early on, before we had researched all the medical options, so we regarded it as funny and something to think about many years from now.” Although they recognized that there is no cure for Dravet, Barry and Shannon hoped that regular oral administration of the oil would improve Kaitlyn’s quality of life.

The Canadian family aren’t alone in pinning their hopes on medical marijuana to alleviate illnesses among children. On June 24, the New Jersey Legislature passed a bill that would make it easier for minors to receive medical marijuana, a decision advocates believe is signaling a larger change. “People want access to natural and safer remedies—for themselves and for their children,” said Paul Armentano, deputy of NORML, a non-profit organization that lobbies for the reform of prohibitive marijuana laws.

Gregory Carter, a professor at the University of Washington School of Medicine and a clinician specializing in neuromuscular diseases, has recommended medical marijuana for children with severe neurological disorders, such as cerebral palsy and childhood muscular dystrophy, and has seen “mostly positive” results.

The Pogsons agreed that they would try CBD oil on Kaitlyn. The problem they soon came across is that the use of CBD oil is not permitted under Health Canada regulations.  The Pogsons decided to issue a challenge to find a legal means for their daughter to have access to the medication in Canada. However, when the Pogsons took their case to Health Canada, they were told there would be no change in policy.

This meant that looking towards the U.S. was the only solution for the Canadian couple. Deciding that the western U.S. was the nearest location, Kaitlyn’s parents placed her on a waiting list for the medical center Realm of Caring in Colorado. If the waiting time proves too long, their next option is to look to similar centers in California.

While the research evidence points to cannabis oil’s efficacy for the treatment of seizures in children, there are also some risks. The effects of long-term use in particular are unknown, especially the psychological effects, according to Dr. Asaf Keller, Professor of Anatomy and Neurobiology at the University of Maryland School of Medicine. In response to concerns about side effects, Barry Pogson’s view is that CBD is “far less dangerous with fewer side effects than any pharmaceutical seizure medication. It has a higher success rate and treats the whole disorder, not just the seizures.”

Barry focuses on the reported benefits of medical marijuana oil, which he lists as “increased appetite and return of lost cognitive functions.” Another advantage is that once the program is set up, the Pogsons should be able to administer the treatment at home, avoiding extensive trips to medical centers.

However, the treatment won’t be cheap; Barry calculates that “CBD powders from hemp can be almost $50 a day.”

The aim of securing treatment in Colorado hasn’t prevented Shannon and Barry from seeking to change Health Canada’s policy. They believe that it should be their right to use the best treatment for their child. They aren’t staying still; the couple launched an online petition to encourage a clinical study on the low-THC marijuana. A successful clinical trial would give Health Canada the evidence it needs to change its policy towards the use of cannabis oils, they tell The Medical Marijuana Review.

Speaking about the campaign, Barry is overwhelmed with how well it is progressing: “The campaign has exceeded our expectations; the recent media coverage gave it a huge boost. People have been overwhelmingly supportive and positive. It’s a popular subject in Canada and many are in favor of legalizing CBD treatments. We’ve had offers from growers and a couple offered their house in Colorado.”

Barry stresses that CBD oil “should be available everywhere,” and he’s optimistic about the chances that their petition will affect Canadian health care policy.

Meanwhile, the couple’s main concern is with their daughter and securing the medical marijuana treatment needed to address the terrible seizures impairing her young life.

Photo courtesy Flickr user Kourtlyn Lott