Alexis Bortell has been using marijuana since March 2.
She’s not a pothead, a Deadhead or a Wall Street banker winding down from a 15-hour workday. She’s a 9-year-old Texan who’s spent the last two years in and out of hospitals and the school nurse’s office, fighting the symptoms of intractable epilepsy — a fancy name for epilepsy that medicine can’t seem to soothe.
That is until she tried cannabis. “It’s worked where everything else failed,” says her father, Dean Bortell. He remembers watching from the sidelines as Alexis underwent hours of testing and medicating during her first seizure episode, when she was just 7 years old. “She just kept seizing and seizing,” the Rowlett dad recalls. “It was awful.”
But the string of medications her doctors tried over the ensuing months did nothing to help. Instead of reducing Alexis’ seizures, the drugs made them more frequent and more violent. Her school days were interrupted by visits to the nurse’s office, and her nights were punctuated by seizures, spasms and fearful awakenings.
“It was not a good quality of life,” Bortell recalls, for Alexis or her parents. Liza, Alexis’ mother, spent every night in her daughter’s room for almost two years because she worried that the baby monitor wouldn’t be enough to wake them if Alexis began to seize. “You had to kind of rotate who got to sleep,” Bortell explains. “We thought that’s how it was going to be until we found the magic pharmaceutical that she could tolerate and that would work, and it just never materialized.”
At the recommendation of a neurologist, the Bortells took Alexis off the medications entirely. Though she continued to have seizures, she was back to her baseline: nighttime seizures with a few daytime spasms. “But we took that as a blessing because she wasn’t falling down, she wasn’t violent anymore,” Bortell divulges. “We could live with that.”
Then in February of this year, the status quo changed abruptly when Alexis had a particularly horrific eight-minute seizure. “There was a short period in the seizure where she stopped breathing,” Bortell recalls. “She was choking on her own fluid.” Mom and Dad couldn’t help her, and neither could the doctors, who told the family what they already knew: Alexis was out of options.
So the Bortells created an option where there was none. They moved to Colorado, so their daughter could start a regimen of medical cannabis. They’re not the only parents to pack up their lives for a chance to relieve their child’s pain; Colorado is full of medical “refugees” from states like Texas, where marijuana is illegal in all forms. Though the hard data on medicinal marijuana is just now being gathered, families who’ve already taken the plunge are contributing to a pile of anecdotal evidence that physicians and policymakers alike can no longer afford to ignore.
Do you believe in miracles?
Desperate parents like the Bortells aren’t turning to cannabis on a whim; the plant has a long history of medicinal use that’s been clouded by its less-than-stellar recreational reputation. Rana Said, M.D., associate professor of pediatrics, neurology and neurotherapeutics at the University of Texas Southwestern Medical School, credits Sanjay Gupta’s CNN specials with reigniting public interest in marijuana as medicine — primarily for children with epilepsy, but also to treat Crohn’s disease, glaucoma, cancer, severe pain, mental disabilities and behavioral disorders. The media has latched onto miraculous stories like that of Charlotte Figi, a girl with Dravet syndrome (a rare and devastating form of epilepsy) whose seizures have been greatly reduced by cannabis. The particular strain, now called Charlotte’s Web, maintains a hefty waiting list of clients as Charlotte’s story reaches the ears of parents who are hungry for hope and answers.
Charlotte’s Web, an orally ingested tincture, is derived from a specific part of the cannabis plant: cannabidiol (CBD), which is not psychoactive (in other words, it doesn’t make you high). Tetrahydrocannabinol (THC) is the part of the plant that does make you high, but some strains of medical cannabis contain small amounts of THC because anecdotal evidence suggests that THC can boost the efficacy of the CBD. Charlotte’s Web has a tiny concentration of THC, as does Haleigh’s Hope, the strain Alexis is using.
Alexis responded almost immediately to her first dose of Haleigh’s Hope. Her hands stopped shaking. She passed three hours without a single tremor. Then she went to bed and slept through the night for the first time since her diagnosis. “Since that first dose, we still to this day remain not just seizure free, but symptom free,” Bortell reports. “It’s 100 percent better. I’m getting to spend time with my wife again. When [Alexis] goes to bed, she’s not scared anymore. Her self-confidence is back.”
“Symptom free” is a magic phrase for many families who watch their children suffer daily. Is cannabis the miracle drug these parents are searching for? Despite the stories of children like Alexis and Charlotte, the answer is likely no. A 2014 study funded by GW Pharmaceuticals found that 39 percent of pediatric patients saw their seizure frequencies reduced by more than half while taking a form of cannabis in development by the British company. Those results are nothing to sneeze at, but they’re not indicative of a panacea, Said stresses.
With mostly anecdotal evidence and little hard data, the jury is still out in the medical community. “There are a lot more questions than answers right now,” says Edward Maa, M.D., associate professor of neurology at the University of Colorado and chief of the comprehensive epilepsy program at Denver Health, who is conducting his own observational study among patients on the Charlotte’s Web waiting list. He admits the plant shows promise, especially for children with certain types of epilepsy. “The anecdotes are out there and I think it’s worth investigating. We’re all eagerly awaiting the big trials when they’re able to be done.”
Fear of the unknown
The approval process is a slow go, because the federal government classifies cannabis as a Schedule I drug (the same designation given to heroin and LSD). Organizations like the American Academy of Pediatrics are urging the government to reclassify marijuana as Schedule II, which would put the drug in the company of cocaine, meth and Adderall, making it easier for scientists to conduct clinical trials.
Until then, “we don’t know” is the prevailing consensus about cannabis among scientists and physicians — and that’s a scary prospect when it comes to a powerful substance like marijuana. “We have innate cannabis receptors in our body, in our brain, which is fascinating at its own level,” Said explains. The cannabis somehow interacts with these receptors to decrease brain activity and increase inhibition. Exactly how the medicinal magic happens is TBD, though several mechanisms have been hypothesized, says Maa.
Scientists also don’t know the long-term side effects of cannabis. While physicians are hopeful, they’re cautious about endorsing the drug before all the negative effects have been thoroughly sussed out. “Like any other treatment, we have to be rigorous in the testing, see what the results are, and then we can have confident conversations with families where we explain both the benefits and the risks,” Said says.
So far, she admits, the short-term side effects seem to be mild, with sedation being the most prevalent. But no one has had a fatal reaction to cannabis, which can’t be said of other anti-epilepsy medications.
“If I were to list for you one seizure medicine, the potential side effects of it, if it were for your child, you would run for the hills,” Said says. Think fatal rash, fatal liver failure, kidney stones, reduced platelets and intellectual slowness, among other deleterious effects. “Can I stand here and say that CBD is worse than any of our other treatments? Definitely not. We don’t know enough about it. There have been many instances of medications that have come out on the market that we initially thought were outstanding, and it wasn’t until we used them in a prolonged fashion that we understood it better.”
Despite the uncertainty, Said says she and her colleagues are at least open to giving cannabis a chance. “We can’t put our heads in the sand and say we’re not even going to consider it because it’s scary CBD,” she says. “Everything we do in medicine has inherent risks and everything in medicine at one point seemed brash. I think it’d be harder to find a physician who reads medical literature to be 100 percent against it.”
Affairs of state
All the promising data in the world mean little if legislators aren’t willing to give medical cannabis the green light. Right now in Texas, possession of cannabis oil carries a felony charge, not to mention a swift appearance by Child Protective Services if a parent is found dosing his child. If Alexis comes home, the state could arrest her father and take Alexis away from her family. Until the law changes, Alexis is stuck in Colorado.
Josh Schilling, a Dallas dad of three, is also waiting for the law to change because he doesn’t have the freedom to relocate to Colorado. His son Nicholas has a variety of debilitating conditions, including cerebral palsy, a seizure disorder and autism. Four years ago, Nicholas’ body mysteriously began to shut down, and the cocktail of medications he takes to manage his symptoms just tear up his insides further. “We are out of options. There are no more drugs,” Schilling says. As Nicholas’ time slips away, his dad is focused on simply managing his pain. “We’ve been given a timeline for our son. God knows how long he’ll be with us, but I want him to be happy and pain free; and so that’s why we would try it tomorrow.”
Schilling is hopeful but not expectant, because the taboo against marijuana is still strong enough to make legalizing cannabis an uphill climb. “I think the status quo is still likely to prevail right now,” says Matthew Eshbaugh-Soha, Ph.D., associate professor of political science at the University of North Texas. “Given the way the Texas legislature works — every other year — then a lot of what is likely to happen happens [in negotiations] beforehand. This might lay the foundation for future pre-session negotiation.”
That doesn’t mean some legislators aren’t trying in 2015. A variety of pro-medical cannabis bills have been introduced into this year’s legislative session, including House Bill 892, sponsored by Representative Stephanie Klick of Fort Worth. She says her colleagues are warming to the idea of legalizing CBD oil to treat intractable epilepsy, as long as the law is narrow enough to curb abuse — politicians’ biggest fear about legalizing any form of marijuana.
To that end, Klick’s bill restricts the amount of THC to .5 percent and would not extend to children with other conditions, like mental disabilities or cancer. “Right now, we do not have the data that would support other conditions,” Klick explains. “Many of these children that have Dravet syndrome also test on the autism spectrum. My hope is by making this permissible to be prescribed [for children] with Dravet syndrome and intractable epilepsy who also have an autism-related disorder that we may get more data on how those conditions might respond.”
House Bill 892 would not help families like Christy Zartler’s. The Richardson mom, whose daughter has cerebral palsy, self-injurious behavior and autism, is at the end of her rope. Her daughter Kara, 15, punches and hits herself and anyone who tries to stop her. She’s put her mom in the emergency room with severe bites — and this is while on medications that are damaging her liver and kidneys even as they fail to control her behavior. “My options are done,” Zartler says. “I don’t have any other medicines to try.” Except cannabis, that is, but a narrow law focused on intractable epilepsy wouldn’t allow her daughter to get treatment in Texas.
While Zartler says she would support any medical cannabis bill in order to get the ball rolling, her daughter needs more inclusive legislation, which until this month looked like it wouldn’t arrive until the 2017 session. But on March 13, Representative Marisa Márquez of El Paso introduced House Bill 3785, which is more broadly written than Representative Klick’s bill. The proposed legislation would make cannabis legal for patients with a variety of qualifying conditions, including cancer, Crohn’s disease and “any other medical condition or symptoms caused by the treatment of a medical condition approved as a debilitating medical condition.”
While such a law might allow for abuse, it would also allow Kara to receive treatment and Alexis to return to Texas. Despite the stigma the legislation would have to overcome, Bortell is optimistic. “I think even Texas can do it,” he says. “Alexis wants to come home.”
A new leaf
Christy Zartler and Dean Bortell have spent days in Austin lobbying for what they believe is life-changing legislation, while Alexis does her part from afar. Her organization, Team Alexis, has united families looking for answers to their children’s pain. Like Charlotte, Alexis has become a poster child for the hope cannabis offers.
Now that she’s symptom free, Alexis is learning how to be a kid again. Because of the ever-present threat of seizures, she wasn’t able to have sleepovers or learn how to ride a bike. “Before, she didn’t have any goals. Her only goal was not to have seizures,” her dad remembers. “Now she’s talking about playing and snow skiing, golfing and making friends. She’s getting a fresh start.”
And unlike Alexis’ previous medications, cannabis does not seem to have any side effects so far — except one. “On Day 7, I asked her, ‘Do you feel any different?’” Bortell recounts. “She said, ‘Dad, I’m happy. Is that a side effect of the medicine?’ And I was like, ‘What do you mean?’ And she said, ‘I haven’t had any seizures. I’m playing in the snow. I’m happy.’ I guess if there’s a side effect it is that she’s happy. She’s not high. She doesn’t act any different. She acts like herself.”
Published April 2015