Naturally Controversial / For some Texas families with kids who self-injure, medical cannabis is the only answer to help their children.
Walker McCain, 22, who is severely autistic, started his self-injuring behavior when he was 5. At Sunday school in Carrollton, he would sit and repeatedly punch himself in the face. And it only got worse as he got older. He banged his head, pulled his hair, and bit his hands so hard they bled. He eventually developed cauliflower ears, a deformity caused by blunt trauma typically seen on wrestlers and boxers. Walker caused his by excessively slapping the sides of his head.
Walker’s communication is limited. He’s basically nonverbal, so banging his head is how he gets attention. No one knows for sure what triggers this behavior, but it seems as though even simple changes in the weather can bring on his self-harming tendencies. And according to the U.S. Centers for Disease Control and Prevention, 28 percent of children with autism disorders are also self-injurers.
Walker’s mom, Tracy McCain, 50, calls him “a toddler in a man’s suit,” which can be dangerous. Just like some toddlers, Walker expresses frustration with aggression, usually directed at himself, but he’s big and strong, and his mom worries he might unintentionally hurt someone else too.
Managing his behavior has been a daily challenge that McCain has endured for nearly two decades. From the time her son was in kindergarten, McCain worked closely with Walker’s teachers. By 12, Walker’s behavior was deemed severe, and he risked being sent to a residential living facility. Some of the applied behavior techniques, like positive reinforcements, and a total reconditioning plan helped reduce the hitting but did not eliminate the self-injury.
Now, 17 years later, the frustrated mom continues to meet with neurologists and behavioral specialists but none have found success in ceasing Walker’s self-abuse. In that time, doctors have written over 30 prescriptions. Anti-psychotic drugs risperidone and olanzapine, typically used for schizophrenia and bipolar disorder, provided temporary relief but wore off quickly. Both caused significant weight gain and caused Walker’s breasts to grow, so his mom weaned him off. She also tried anti-depressants such as Prozac and a variety of seizure medications, but his behaviors and moods worsened.
A checkered past
Marijuana has a long and controversial history. For years, it was the biggest villain in America’s war on drugs because it was known as the gateway drug, a habit-forming drug that, while not addictive itself, may lead users to try — and subsequently get hooked — on other addictive drugs.
On June 1, 2015, Gov. Greg Abbott signed Senate Bill 339, known as the Compassionate Use Act, which cracks the door for those who need medical marijuana in the state of Texas. The law goes into effect starting September 1 of this year. Under the new law, authorized doctors may prescribe low-THC cannabis that has 10 percent or more cannabidiol (CBD) — a cannabis compound with purported medical benefits — and not more than 0.5 percent THC, the psychoactive chemical in marijuana that gets people high.
This law, however, only pertains to patients diagnosed with intractable epilepsy — a fancy term used to describe epilepsy that traditional medicine doesn’t seem to help — who have tried at least two FDA-approved seizure drugs that have proved to be ineffective.
Dr. Scott Perry, medical director of neurology at Cook Children’s in Fort Worth, is in the process of conducting clinical trials for medical cannabis for children with tuberous sclerosis complex, a genetic disorder that causes benign tumors to grow on organs such as the skin, kidneys and brain, potentially leading to seizures.
These children may be able to get relief under the new law, but it's leaving out plenty of others who are fighting for legal access to cannabis oil.
For patients with severe autism, there is very little scientific research to go on, so it is, in fact, still illegal to use medical cannabis as a form of treatment for kids — or adults — with severe autism.
A couple of years ago, McCain, feeling completely defeated, decided to take matters into her own hands. She pored through studies, articles and stories online and came across a YouTube video featuring a boy with self-injuring tendencies that mirrored Walker’s. The boy in the video was being treated with whole-plant THC and CBD oil.
The boy’s parents documented positive changes in his behavior using the cannabis. Really, there’s no shortage in anecdotal evidence online. Google "CBD and autism" and the search results include pages and pages of blog posts and videos highlighting parents’ positive results using CBD oil as a form of treatment for their severely autistic children. One such video that appears on the first page of search results happens to belong to Richardson dad Mark Zartler. Earlier this year, he posted a video of himself treating his 17-year-old autistic daughter’s self-injurious behavior with vaporized marijuana. It went viral.
The anecdotal evidence McCain combed through on YouTube, Facebook and other social media platforms of autistic children helped by CBD oil sounded and looked very similar to the stories she read and heard of children with epilepsy who have responded positively to CBD.
Alexis Bortell, 11, is one of them. She was born healthy, but at 7, she was diagnosed with rolandic epilepsy, which caused multiple seizures a day.
For two years, Dean Bortell, Alexis’ dad, tried a range of FDA-approved drugs at the recommendation of different neurologists. But the seizures only seemed to get worse. And for elementary-age Alexis, having seizures at school, in front of her classmates, was scary and embarrassing. Not to mention, she wasn’t able to attend many birthday parties or sleepovers because the seizures at night were relentless.
Then in 2014, CNN News aired Dr. Sanjay Gupta’s documentary Weed 2. It featured a child with severe seizures whose symptoms were seemingly reversed with CBD oil. Bortell was watching.
In Colorado on business that same year, Bortell consulted a neurologist and two doctors, all of whom spoke about CBD oil and whole-plant cannabis and the potential to treat Alexis with it. Bortell tried medical cannabis on his daughter and noticed a reduction in seizures right away.
The problem, however, was that Bortell and his family lived in Rowlett at the time, where doctors said brain surgery or Felbatol, a drug with known liver failure risks, were potentially the only options after Alexis endured a particularly bad eight-minute seizure that intermittently stopped her breathing. Her doctor did mention that cannabis would likely be a lot safer.
That was all Bortell needed to hear; he moved his family to Colorado.
But relocation to Colorado or one of the 28 other states where medical marijuana is legal isn’t an option for most, including the McCains.
Risk vs. reward
Even though Texas passed the Compassionate Use Act, which allows kids with epilepsy to use CBD oils, the law mandates that the level of THC be exceptionally low, almost non-existent, which doesn’t help Alexis, who has been seizure-free for 700 days (as of press time) with a higher dose of THC.
“Knowing what I know now,” Bortell says, “if all I had was illegal access [to Alexis’ medicine], I would still do it. It saved my daughter.”
So is that the only answer for moms and dads with severely autistic children - to administer medical cannabis illegally?
McCain started following Mothers Advocating Medical Marijuana for Autism (MAMMA), an online Facebook community started by Texas moms “who have children with autism and are interested in legally pursuing medical cannabis as a safe, effective and therapeutic treatment option for their kids.” Here, McCain has found lots of information and support.
Because not all parents in Texas are as forthcoming as the Zartlers, who were reported to Child Protective Services (CPS) after their viral video made national headlines. Fearing incarceration or losing their children, lots of local parents keep quiet.
Even so, McCain says she’s at the end of her rope. “Self-injury is the worst thing I’ve ever been through and to watch my own son beat his face in, yes, [the consequences would be worth it].”
Jessi French, a board-certified behavioral analyst with Crosspoint Autism Therapy in Plano, agrees. She works a lot with kids on the spectrum who self-injure. She understands the need for a better quality of life for these patients and supports whole-plant medical cannabis for the treatment of severe autism.
French says keeping medical marijuana illegal actually makes it more dangerous, since well-meaning parents take matters into their own hands, potentially exposing their children to greater risks than the cannabis poses. She knows plenty of parents who order it online or visit less-than-safe neighborhoods in Dallas-Fort Worth to purchase it. She says she knows desperate parents who buy CBD oil labeled "dietary supplements" from a “head shop,” slang for a store that sells drug-related paraphernalia. “People have no idea what’s in that bottle and parents should be careful about what they buy [and then give to their kids],” she warns.
Perry says these over-the-internet supplements carry unknown risks: How do they affect a child’s cognition? How do they interact with other medications? “None of these supplements have been rigorously tested so while they may be safe, we don’t have research to prove that,” he explains. “There is no standardization or oversight on quality [of these products].”
Cecilia McCoy, whose name has been changed, understands the dangers but opts to treat her 10-year-old son, who suffers from epilepsy with continuous spikes and waves during slow-wave sleep (not covered under the Compassionate Use Act), with CBD oil she purchases online anyway.
Her son’s seizures started when he was 5. Three neurologists and trial-and-error treatments brought no relief. He missed school constantly and by second grade was already two grade levels behind in reading and math.
The Collin County mom took her son’s chronic condition in her own hands. Online, she found other parents dealing with the same diagnosis, some using CBD oil with success. She brought her findings to her son’s doctor, who dismissed the idea, even refused to discuss it because of the legal ramifications that could be brought against him.
In March 2015, she placed her first online order — on the recommendation of another parent in her virtual community — for Bluegrass Hemp Oil (formerly Kentucky Cannabis Company), a supplement derived from high-CBD and low-THC hemp plants. (The less than 0.3 percent THC means it’s legal to ship it across state lines.)
“Parents might be able to buy it legally online but are still shooting in the dark as to what will be a beneficial dosage,” French cautions.
Since McCoy hasn’t found a doctor to support her chosen treatment for her son, she takes dosing recommendations from the botanist at the dispensing company. She administers it to her son through a syringe two times per day.
She’s been doing this for two years, and she’s seen dramatic results. Her son has far fewer seizures, is currently in fourth grade and reading at grade level. He still requires some special education services, but even those have lessened in frequency.
Research and recommendations
GW Pharmaceuticals, which participated with Cook Children’s in successful clinical trials using Epidiolex, a CBD oil, to treat children with epilepsy, is now working on something similar to help children with severe autism. Stephen Shultz, vice president of investor relations for GW Pharmaceuticals, says, “It is our intention to start clinical trials in the second half of this year for autism and Rett syndrome [using a drug] containing CBDV.” (CBDV is a non-psychoactive cannabinoid very similar to CBD.)
And this might be just the beginning. Other diseases that could potentially benefit from whole-plant cannabis include cancer, neurofibromatosis, and fragile X.
Texas lawmakers filed bills in both the House and the Senate this year that would legalize marijuana for autistic patients, but neither passed. Families advocating for medical cannabis were actually pretty close to winning House Bill 2107, which would have allowed patients with “debilitating medical conditions” (autism was listed as one of the conditions) access to whole-plant treatment. It received unprecedented support from legislators. It was, however, declared dead because of a technicality: It didn’t make the calendar deadline. Frustratingly, parents like McCain have to wait until the next legislative session in 2019 to plead their case.
Matthew Eshbaugh-Soha, professor and chair of the political science department at the University of North Texas in Denton, says the fact that the bill got as close as it did shows real promise. He suggests that parents with severely autistic children contact the governor, lieutenant governor and any member of the House who expressed support for the bill. “The foundation is there now,” he says. “Make the argument that additional groups could benefit.”
But Sen. José Menéndez, who authored the Senate Bill, has said that this is an uphill battle. “[Some politicians] don’t want to be seen as pro-pot.”
So today, for parents like the McCains, the dilemma is still real: Let their son beat himself up, and they’re negligent. Give him medical marijuana to soothe him, and they’re criminals. “This is not about stoning our children,” McCain says. “We are fine with it being regulated and want it researched for long-term effects.”