- NOT WHAT THE DOCTOR ORDERED Many parents looking to use cannabis to help their children are on their own. The legal landscape around pediatric cannabis can put parents at risk.
The young boy was borderline autistic and suffered from anxiety and a learning disability when he went to see Dr. Jeffrey Hergenrather.
"He was like a raccoon in his office on that first visit," says his mother, "Paula," who requested anonymity for this story, as she described her son bouncing off the medical-office walls like a wild animal. "Literally—like we brought a raccoon," she repeats with a slight laugh.
That was about four years ago. Hergenrather, a Sebastopol-based physician, has recommended cannabis to children who have come through his practice since the state's 1996 medical cannabis law was enacted. He recommends its use for medical conditions ranging from autism to epilepsy to cancer to genetic disorders and mental disabilities.
For autistic children and teenagers, cannabis "works so well for reducing anxiety, reducing pain and reducing agitation and anger," Hergenrather says, especially as autistic children become adults. "The calming effect of cannabinoids has been a real plus for families."
After her consultation with Hergenrather, Paula found a woman in Southern California who had developed an edible product, a brownie, especially for autistic kids.
"That was our first introduction," she says, "and we started him on it two days before school started. He was just out of summer school and that had been a hot mess—he was miserable, they couldn't get him to do anything. That was two days before. Then he went to school without any protest, and he did every single task they put in front of him," Paula says, with another slight laugh.
The parents and teachers and occupational therapists were shocked at the sudden change. "What the heck happened, what did you do?" Paula recalls them asking her, "and they were looking for me to say that we had put him on meds."
But Paula played off the inquiries, given the sensitivity and stigma around pediatric cannabis. "I guess we are having a good week," she told them. "I played dumb. No one put a finger on what happened, but it was a big success."
Paula's story is one of thousands involving pediatric cannabis in the state, in a gray-area legal world where the conditions being treated may not be as serious as childhood cancer, but are nonetheless devastating or debilitating to families.
The 1996 California law didn't come with any age limits on who can or can't access medical cannabis, but physicians are boxed in by an overarching federal scheduling of the drug that says marijuana has no medical benefits whatsoever, and the absence of a state law that would legalize cannabis outright.
Even as pediatric cannabis protocols and attitudes are in flux, parents in Paula's situation are pretty much on their own, she says, and with the risk of a call to child protective services (CPS) if they are not careful with the cannabis they provide their children.
"Because it's not fully legal here," says Paula, "[Hergenrather] can't tell us what strain, what dosage, where to get it—it's on the parents to figure it out."
She credits the work Hergenrather's done on behalf of children in California , as she points out the twisted ironies of cannabis law and morality. "He treats so many kids that are so successful, but their parents are afraid to tell their doctors why."
Paula and the doctor agree that the best medicine is whole-plant medicine that balances the compounds cannabidiol (CBD) and THC (the psychoactive compound in cannabis) and the terpene oils in the plant.
"CBD is a great physical healer," Paula says, "but we are focused on cognition." By itself, she says, CDB-only products "did absolutely nothing" for her son.
Paula and her husband took it upon themselves to find the right medicine for him. Paula's husband does the medicinal cooking, she says, after they've secured one of two strains of Kush, which is hard to come by because you have to grow it outdoors in order to be working with organic product. They use the Northern Lights variety for depression and the Blue Dream to treat their child's anxiety, she says.
"We learned a lot about it cooking it on our own," says Paula, who has been making cannabis capsules for her child for four years. She and her husband were open to cannabis treatment for their child all along, she says, unlike many parents who are equally desperate, but "who have this stigma, that this is a horrible drug. For them to have to figure it out on their own, that's nearly impossible."
But the government's ban against children feeling any sort of euphoria has meant the advent of products such as Epidiolex, which comes from Great Britain and is "a federal investigational new drug which is 99 percent CBD and 1 percent non-THC cannabinoids," Hergenrather says.
"The reason they took out the THC is purely political," he adds. "THC is a great anti-convulsant. So when doctors in my specialty are trying to control seizures, sometimes they get access to Epidiolex, people qualify to use it, but if they are not getting as good control for seizures as they'd hope to, they're bringing back more of the THC into the product that they are using." Products that contain all the compounds, he says, "work better, you get better pain [relief], better anti-cancer, and it's a better medication for treating seizures. Kids don't seem to have a problem with more THC in the meds. It's a fiction."
Pediatric cannabis got a big boost from CNN's resident physician Sanjay Gupta in 2013, when he reported on an extract made from a Colorado strain called Charlotte's Web that helped to control a young girl named Charlotte Figi's grand mal seizures. Hergenrather noticed the difference a TV star can bring to a debate.
"I had a bell curve of my age distribution for a number of years," he says. "And there were very few children and very few older people—the center of my bell curve was about 48 years old, and 99 percent of those people were using cannabis to start with. Over the past five years, that has changed drastically," Hergenrather says. "I was treating kids for cancers and seizures prior to that time, but it really increased the number of patients that were seeking a recommendation. Parents got a lot more comfortable with it—if they see it on TV, hey, they can do it too."
Charlotte's Web is a strain with a high level of CBD but comparatively low levels of THC, about a 20–1 ratio, says Hergenrather. "It's very low in THC, so the psychoactivity is markedly reduced."
And also more socially acceptable. The Gupta broadcast and advent of Charlotte's Web—Hergenrather likens the strain to California's ACDC strain—led states like New Jersey and Florida to enact last-resort pediatric cannabis laws. But there's the problem right there, Hergenrather says. "It's a first resort."
In the four years that she has used cannabis to treat her son's borderline autism (but technically undiagnosed) and associated conditions, Paula has noticed the shift in public opinion, too.
"Parents are more open to it, now they are bringing it up. But there's no step-by-step guide to treating your kid with cannabis in 2016. They need some guidance, and there isn't anything. We want so bad to be that voice, be that support group, but it is so risky. Even if it's legal and there's not necessarily an age limit, it just takes that one person to call child protective services. In the end, maybe you keep the kids, but who the hell needs that anxiety?"