Talking to parents of children who use cannabis to treat severe epilepsy

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Courtesy of Lift Magazine

A great deal of confusion and uncertainty exists among the practitioners and patients in those states that have legalized medical cannabis. This is the most relevant with minors, around whom distorted cultural beliefs about the effects of cannabis and real fears of persecution or marginalization are quite common.

Nevertheless, despair has lead parents of children with intractable epilepsy to turn to medical cannabis, despite the many social and practical blocks. Epilepsy, which is characterized by recurrent acute seizures, is the most common of pediatric neurological disorders. About one third of children resist pharmacological medication and those failing two drugs have a mere 5% chance of responding to any drug at all. Untreated cases are often associated with severe psychological and physical impairments.

In a grounded study published in the journal Social Science & Medicine, Dr. Elisa Sobo from San Diego State University interviews and discusses the main problems affecting the parents of intractable epileptic children.

Twenty-five parents (of which 22 were mothers) were contacted by Dr. Sobo. Their children were on average 10 years old and had been under treatment for an average of 8 years. Medical cannabis cost $329 per month on average, which by not being insured may have contributed to discontinuation by some of the family households.

Considering cannabis for the first time

Parents learned about the the potential of cannabis via word-of-mouth, television and social media. At first most were reticent in pursuing it, still hoping they would find an effective regulated pharmaceutical. One of the parents was quoted as saying:

“I was hoping that Felbamate would work… . I didn’t have enough information to go on. How was I going to get cannabis? How was I gonna get a neurologist to agree to treat my child while trying it?… And then… as a parent, you’re just hoping any of these FDA approved drugs are gonna help. You don’t wanna go that [non-approved] route.”

But as all epileptic treatments became exhausted and doctors started suggesting more and more unorthodox drugs (off-label is a common practice in pediatric intractable cases), parents felt compelled to give cannabis a try. Many parents resented the double-standard among practitioners, who despite prescribing off-label medication were still reluctant to talk about cannabis ‘because it is not FDA approved’.

Parents reported a great level of skepticism previous to trying cannabis, and a few criticized the naive idea that cannabis is a ‘one-size-fits-all miracle cure’. On the other hand, they were keen on trying different preparations if the first did not work. The author writes that:

“Like doctors, they practiced trial-and-error, only without limiting their experiments to pharmaceuticals.”

Starting cannabis treatment

Deciding to try cannabis was just the first step. Finding a referral was seldom easy, and many parents ended up going to rather ‘shady places’, where people were trying to sell simple cannabis buds. Needless to say most did not get precise advice about dosage and preparation, and had to turn to social media groups for support.

Parents trusted parents of other ill children or experts that could be reached online. They often started with CBD formulations with minimal THC. The regimens were based on what had worked on children with similar characteristics, similar to what doctors do with off-label prescriptions.

A general rule of thumb was ‘start low and go slow’. Many attempted to use weight-based formulae, but products’ contents were imprecise to say the least. One mother reported that she had been told:

“Start out with a grain of rice. What the heck is a grain of rice? We needed exact milligrams to weight.”

Parents often tested the strains to verify their ingredients and control for pesticides and toxins. Some did so regularly, while others only when they changed suppliers.

Thinking like a doctor

Parents made use of their previous caregiving experience when trying out cannabis on their children. Because cannabis can inhibit the metabolism of other drugs, they measured blood drug levels at different points to make sure they were not reaching toxic levels. Some would remove cannabis if this was the case, whereas others would gradually reduce the prescribed medications.

They favored controlled experimentation, changing only one variable at a time. In most cases they initiated cannabis without changing any other aspect of the treatment, to have a valid control baseline. Before and during the experimentation they kept track of the most relevant clinical variables: seizure activity, sleep and bowel movements. Their language reflects a medical way of thinking:

“Meena reported seeing ‘immediate decrease in the length, frequency, and duration of the seizures within the first month. The seizures were shorter, less severe, and less frequent. … They were decreased by 50% and then 75% and then 80%.”

Efficacy and adverse events

The author shies away from any strong conclusions about cannabis’ efficacy due to the non-randomness and small size of the sample. She mentions merely that “prior to cannabis, the sixteen child users had taken an average of seven pharmaceuticals. Now, they took an average of one, with eight of the sixteen on none.”

Regarding side effects, one mother said that:

“I could probably drink a bottle of CBD and nothing would happen.”

Unlike standard and off-label drugs, cannabis posed no adverse events. Moreover, low THC cannabis preparations were not sedative, which for many parents was a game changer:

“Cannabis, said Aileen, ‘finally allowed me to meet my son’.”

Filling a gap in epilepsy research

Parents see themselves as filling a temporary gap in epileptic research. Most hope that their stories will keep instigating the attention of big pharma, for only they can institutionalize medical cannabis. Large randomized controlled tests, precise drug formulations, reliable distribution and above all a legal framework were the things parents most hoped pharmaceuticals would soon enable. In addition, parents hoped that a better dialogue could be established with their children’s practitioners.

Thus, parents looked at pharmaceutical companies and medical personnel as cooperators and not as enemies.

“Most parents, however, were overwhelmed (‘It takes me 20 minutes to load my kid in the car on a good day’; ‘I’m always sleep deprived… You’re in survival mode’).”  

The author draws a parallel between cannabis and a ketogenic diet (a high-fat, low-carb diet deemed helpful in some cases of intractable epilepsy), which was pushed out of mainstream medicine by the synthetic anticonvulsant industry in the 40s, but was recently brought back due to the work and tenacity of the so-called ‘citizen scientists’. Will medical cannabis follow a similar path?

Featured image by  Skyseeker.

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