Their stories help shine a light on a small community that rarely speaks out for fear of judgment – and often feels distorted when the issues they face sometimes burst into political discourse, as happened in August when the Governor Charlie Baker has vetoed a proposed study on medical cannabis licensing in schools.
“Old stigmas die hard,” said Abby Stern, the mother of a 20-year-old son with minimal verbalism with severe autism who has taken cannabis tincture since he was 16 to successfully treat seizures, nighttime sleep disturbances, and excruciating gastrointestinal issues related to his intellectual disability.
“I am not doing anything illegal or immoral in sparing no effort in the 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 reluctantly and cautiously sought out marijuana after numerous pharmaceutical treatments failed. They are well aware that heavy cannabis use among adolescents is associated with negative cognitive outcomes later in life. But they insist they’ve weighed those risks against the profound relief they say cannabis has brought to their children’s painful and disruptive symptoms, which include self-harming behaviors and chronic sleep disturbances that also pose significant long-term cognitive risks.
Wellesley resident Sylvia Fogel insists on the benefits of cannabis for her 14-year-old autistic son, whose autoimmune dysfunction has left the non-verbal teenager sobbing in pain for hours from stomach pains and constant headaches.
“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 eventually gave him respite from the pain and an ability to heal. engage and enjoy the life he didn’t have.”
Fogel is also a clinical psychiatrist at the Lurie Center for Autism in Mass. General Hospital, where she helps families navigate the complex spectrum of disorders and symptoms associated with diagnosis.
For these patients, Fogel and other experts have said cannabis is hardly a panacea, and is unlikely to become first-line treatment. Indeed, the exact mechanism of action remains unknown, although it is believed that THC and CBD can affect the excitability of neurons by binding to natural cannabinoid receptors in the brain, which can influence everything from inflammation behind digestive issues to irritability and other problematic behaviors.
But proponents argue that cannabis’ safety profile is excellent compared to many prescriptions, and that outstanding scientific questions and stigma shouldn’t prevent it from being considered when traditional drugs don’t work. or cause unacceptable side effects.
“We don’t see healthy kids coming with their parents to get medical cards for fun,” said Dr. Benjamin Caplan, whose Massachusetts practice specializes in pediatric medical marijuana cases. “The children we see are extremely difficult, whether it’s seizure disorders, extreme autism or serious emotional illnesses. Cannabis is revolutionizing their lives and allowing them to function and participate normally in daily life where they simply could not before, including at school.
Fogel and the other mothers said they resent the implication in recent coverage that they are irresponsible caretakers who want to get their kids high, or have been duped by cannabis companies in an insidious push to market the drug in children. In fact, they said, they’ve worked closely with doctors to minimize risk, including using the smallest effective dose possible, pairing marijuana’s THC compound with its moderating cousin CBD, choosing tinctures oral rather than smokable forms and storing the medicine in locked cabinets.
“It’s not kids smoking doobies,” Fogel said. “All the parents I have worked with who have even considered [cannabis] was at the wit’s end in the face of horrible suffering that the average family cannot imagine. They had consulted several specialists and tried several medications, and even then, no one was encouraging them to do so except other parents in the same situation.
But Dr. Sharon Levy, director of the teen substance abuse and addiction program at Boston Children’s Hospital, says there’s not enough evidence to support giving minors such drugs in addition to the anticonvulsant alone. Cannabis derivative approved so far by the FDA. She is also concerned that allowing cannabis use in schools will further normalize drug use by young people.
“The issue here is protecting all the other kids in school from this inevitable march of the cannabis industry on kids,” Levy said. “It may be necessary to allow compassionate use for this extremely small number of severely impaired children and for whom the benefits outweigh the risks, but we need to do this without developing policies that open it up more widely and result in an unintended audience. health consequences”.
Levy added that the study proposed by the state legislature and turned down by Baker appeared to be aimed at expanding access for minors.
Parents of teenagers who use medical cannabis have countered that all sorts of psychoactive drugs that can lead to abuse and dependence are regularly administered in schools without incident, such as the widely prescribed amphetamine salts for ADHD and benzodiazepines. taken for anxiety.
“The law might say schools are drug-free zones, but the reality is that there are already drugs in schools,” said Stern, who carefully plans her son’s cannabis-medicated regimen around it. hours when he attends a special school for children with intellectual disabilities. “It’s hypocritical and absurd to ban cannabis as if it were something completely different.”
Another mother – who asked not to be named because she fears reprisals from her son’s school – said she had recently enrolled her 14-year-old at a private school better equipped to handle the explosions impulsive behavior and the debilitating anxiety associated with his rare chromosomal disorder. But when she asked if the school nurse could give her a small dose of cannabis tincture during the school day, administrators balked. Now she and her husband are debating whether to give her son a larger dose in the morning that would last him all day but risk causing unwanted deficiency.
“I thought naively, ‘It’s legal and he has a card, so of course he can take it to school.’ It was very confusing and frustrating to realize that it’s basically only legal selectively,” she said. “It’s like telling a child with diabetes that he can have insulin, but not between 8 a.m. and 3 p.m.
School leaders expressed sympathy for seriously ill children, but said their hands were largely tied by the federal marijuana ban and related policies banning “illegal” drugs in schools. Tom Scott, executive director of the Massachusetts Association of School Superintendents, said its members were skeptical about allowing medical cannabis in schools, given pot’s history as a recreational drug. Still, Scott said he welcomes input from medical experts on the matter.
“It seems like a legitimate issue and concern for a limited number of students,” he said. “It requires a full review.”
In the meantime, the mums who spoke to The Globe hope that by going public they will help increase the acceptance of cannabis as a legitimate medicine.
“I really wish people were more open-minded,” Stern said, “But I don’t accept any concerns or feel any shame for what we’ve decided to do. Any other parent would have done the same thing.
Dan Adams can be contacted at email@example.com. Follow him on Twitter @Dan_Adams86.
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