Their stories help shine a light on a tiny community that rarely speaks out for fear of judgment — and often feels misrepresented when the issues they face occasionally bubble into the political discourse, as happened in August when Governor Charlie Baker vetoed a proposed study on allowing medical cannabis in schools.

Advertisement



“Old stigmas die hard,” said Abby Stern, the mother of a minimally verbal 20-year-old son with severe autism who has taken cannabis tincture since he was 16 to successfully treat epileptic seizures, nightly sleep disruptions, and excruciating gastrointestinal issues related to his developmental disability.

“I’m not doing anything illegal or immoral by leaving no stone unturned in pursuit of better health for my son,” said Stern, one of the few parents willing to share their names.

Far from being pot enthusiasts, Stern and others said they pursued marijuana reluctantly and cautiously after numerous pharmaceutical treatments failed. They are well aware that heavy adolescent use of cannabis is associated with negative cognitive outcomes later in life. But they insist they have weighed those risks against the profound relief they say cannabis has provided for their kids’ painful and disruptive symptoms, which include self-harming behaviors and chronic sleep disorders that also pose significant long-term cognitive risks.

Wellesley resident Sylvia Fogel is emphatic about the benefits of cannabis for her autistic 14-year-old son, whose autoimmune dysfunction left the nonverbal teen sobbing in pain for hours from unrelenting stomach pains and headaches.

Advertisement



“It saved him,” she said. The low-potency cannabis tincture he took “wasn’t a magic cure,” and he later stopped using it, “but it finally allowed him a respite from the pain and an ability to engage and enjoy life that he hadn’t had.”

Fogel also is a clinical psychiatrist at Mass. General Hospital’s Lurie Center for Autism, where she helps families navigate the complex spectrum of disorders and symptoms associated with the diagnosis.

For such patients, Fogel and other experts said, cannabis is hardly a cure-all, nor is it likely to become a first-line treatment. Indeed, the exact mechanism of action remains unknown, though it is thought that THC and CBD can affect neuron excitability by binding with the brain’s natural cannabinoid receptors, which can influence everything from the inflammation behind digestive problems to irritability and other problematic behaviors.

But proponents argue cannabis’s safety profile is excellent compared to many prescriptions, and that outstanding scientific questions and stigma shouldn’t prevent it from being considered when traditional medications don’t work or cause unacceptable side effects.

“We don’t see healthy children coming in with their parents to get medical cards for fun,” said Dr. Benjamin Caplan, whose Massachusetts practice specializes in pediatric medical marijuana cases. “The kids we’re seeing are extremely challenged, whether it’s seizure disorders or extreme autism or severe emotional maladies. Cannabis is revolutionizing their lives and allowing them to function and participate normally in everyday life where they simply couldn’t before, including in schools.”

Advertisement



Fogel and the other moms said they resented the implication in recent coverage that they are irresponsible caretakers who want to get their kids high, or were duped by pot companies in an insidious push to market the drug to kids. In reality, they said, they worked closely with doctors to minimize risks, including by using the smallest possible effective dose, pairing marijuana’s THC compound with its moderating cousin CBD, choosing oral tinctures over smokeable forms, and storing the medication in locked cabinets.

“This isn’t kids smoking doobies,” Fogel said. “Every parent I’ve ever worked with who even considered [cannabis] was at the end of their rope dealing with horrific suffering that the average family cannot imagine. They’d seen multiple specialists and tried multiple medications, and even then no one was encouraging them to pursue it besides other parents in the same situation.”

But Dr. Sharon Levy, director of the adolescent substance use and addiction program at Boston Children’s Hospital, argues there isn’t enough evidence to support giving minors such medication besides the one cannabis-derived antiseizure drug so far approved by the FDA. She’s also concerned that allowing cannabis use in schools would further normalize use of the drug by young people.

“The issue here is protecting all the other kids in school from this inevitable march of cannabis industry toward children,” Levy said. “There may be a need to allow compassionate use for this extremely small number of kids who are severely debilitated and for whom the benefits outweigh the risks, but we need to do that without making policies that open it up more broadly and result in unintended public health consequences.”

Advertisement



Levy added the study proposed by the state Legislature and vetoed by Baker seemed aimed at expanding access for minors.

Parents of teens who take medical cannabis countered that all kinds of psychoactive medications with the potential for abuse and dependence are routinely administered in schools without incident, such as the amphetamine salts widely prescribed for ADHD and benzodiazepines taken for anxiety.

“The law might say schools are drug-free zones, but the reality is, there are already drugs in schools,” said Stern, who carefully schedules her son’s cannabis medication regimen around the hours he attends a specialized school for children with developmental disabilities. “It’s hypocritical and nonsensical to ban cannabis as if it’s this entirely different thing.”

Another mom — who asked not to be named because she fears retaliation by her son’s school — said she recently enrolled her 14-year-old in a private school better equipped to manage the impulsive behavioral outbursts and debilitating anxiety associated with his rare chromosomal disorder. But when she asked if the school nurse could give him a small dose of cannabis tincture during the school day, administrators balked. Now, she and her husband are wrestling with whether to give her son a larger dose in the morning that would last him through the day but risks causing unwanted impairment.

Advertisement



“I naively thought, ‘It’s legal and he has a card, so of course he can take it at school.’ It was very confusing and frustrating to realize he’s basically only selectively legal,” she said. “It’s like telling a kid with diabetes they can have insulin, but not between 8 a.m. and 3 p.m.”

School leaders expressed sympathy for severely ill children, but said their hands are largely tied by the federal prohibition on marijuana and related policies banning “illicit” drugs in schools. Tom Scott, executive director of the Massachusetts Association of School Superintendents, said his members are skeptical about allowing medical cannabis in schools given pot’s history as a recreational drug. Still, Scott said he welcomed input from medical experts on the issue.

“It does seem like a legitimate issue and concern for a limited number of students,” he said. “This needs a comprehensive review.”

In the meantime, the moms who spoke to the Globe hope that by going public, they will help increase acceptance of cannabis as a legitimate medicine.

“I really wish people would be more open-minded,” Stern said, “But I accept no concern and feel no shame around what we’ve decided to do. Any other parent would have done the same thing.”


Dan Adams can be reached at daniel.adams@globe.com. Follow him on Twitter @Dan_Adams86.