Twenty-five parents who sought or used cannabis for treating their children with refractory seizure disorders were interviewed in a new study.
In a new study published in Social Science & Medicine, Dr. Elisa J. Sobo of San Diego State University investigated the methods and motivations of parents who turn to cannabis in an effort to treat their children’s intractable pediatric epilepsy disorders. Sobo examined the self-education and trial methods parents use as they incorporate cannabis into their children’s treatments, and how their efforts may disrupt and reinforce scientific research.
Sobo interviewed 25 Southern California parents who currently used, had used, or sought to use cannabis on their children with intractable epilepsy. Intractable epilepsy is a seizure disorder that remains resistant to come under control with traditional treatment methods. Some 30-40 percent of patients with epilepsy have intractable seizures, which are also often referred to as “refractory” or “uncontrolled.”
“The study was designed in response to the notable increase of late in the number of parents who are experimenting with cannabis to control their children’s seizures,” Sobo said in a self-produced slide presentation video. “The reasons they do this are pretty self explanatory – biomedicine has failed them, and at this point the options biomedicine can offer seem pretty radical in comparison to trying a little bit of cannabis.”
Parents completed a short survey and then underwent an interview that averaged 66 minutes in length. The average focal child was 10 years old and had experienced eight years of intractability.
“The study focused on how parents come about to the decision to do so, and the ways in which they organize and conduct their cannabis experiments,” Sobo added.
Sobo discovered that parents were generally deliberate and thorough in their exploration to better understand cannabis as a potential treatment option for their children. They were not overly optimistic, as they had become accustomed to unsuccessful treatments. Instead, they did their homework by speaking to other parents, collaborating closely with physicians, and reading literature reviews to learn as much as they could on the efficacy and safety of cannabis. They took the time to identify companies to purchase quality products, learned and used scientific language, and explored how they could incorporate cannabis treatments legally.
The study also found that parents experimenting with cannabis imposed scientific methods. They kept journals to track cannabis doses, measured the frequency and intensity of seizures, and monitored other behaviors like bowel movements and sleep duration. They used controls to ensure not to introduce other new variables while administering cannabis, and even sent products to laboratories to test for cannabinoid content and the presence of pesticides.
While research into cannabis for refractory epilepsy has been promising, more scientific investigations into efficacy, dosage, safety, and delivery systems are still needed. According to Sobo, parents have adapted to a lack of data out of necessity.
“Parents, good biomedical citizens that they are, will seek to fill this data gap, and they do this with self-directed citizen science,” she said.
While Sobo observed that parents were hoping to progress science with their self-directed research, mainstream science continues to disregard their findings. While discounted by experts, the findings by parents have sparked the interest of Big Pharma.
The entire study – “Parent use of cannabis for intractable pediatric epilepsy: Everyday empiricism and the boundaries of scientific medicine” – is available to access through Science Direct.
Learn more about what research has so far discovered about the efficacy of cannabis for epilepsy and seizure disorders by visiting our Research and Education page.