Once a day during the school week, Stephanie Smith must drive to her son’s preschool, remove him from the building and walk him across the street, so she can give him his medication.
The school nurse is allowed to give 3-year-old Paul Borden-Smith a pharmaceutical prescribed to help prevent seizures — a drug with a long list of side effects, such as memory problems, speech disruptions, suicidal thoughts, bone breakage, sudden tiredness and trouble breathing.
But Smith, of Lafayette, has found an alternative drug that she says works better. She also believes it is not addictive, has zero known side effects and has even led to some surprising developmental improvements.
Paul takes marijuana.
He is one of the growing number of children in Boulder County and across Colorado using cannabis for medical reasons.
But this story of a child using medical marijuana is different. Paul does not have active seizures, cancer or one of the eight qualifying medical conditions to use medical cannabis in the state. His mother put him on cannabis oil for preventative reasons — and within two days, she says she began seeing major developmental improvements that no one anticipated.
“It’s healing his mind and his body,” Smith says.
His mother believes his progress may just be the beginning of other medical breakthroughs related to cannabis.
While anecdotal stories such as Paul’s are in wide circulation, scientific studies backing up most of the claims are lacking.
The American Academy of Pediatrics is not on board. The academy has come out against medical marijuana for kids because of its high potential for abuse, the lack of scientific research, the lack of safe supervision under physicians and “well known” negative side effects on short-term memory, concentration, learning, coordination, judgment and more.
However, an increasing number of families, many of whom have not seen improvements in their children from pharmaceuticals, are flocking to Colorado. The Realm of Caring Foundation, a Colorado Springs-based advocacy group, saw 10 transplanted families last week alone.
In August, the foundation had connected 30 children to medical marijuana, typically to a cannabidiol (CBD) oil made from a certain strain known as Charlotte’s Web, named after the first child it helped.
Five months later, the foundation reports 300 children using the oil. Parents say the oil uses a strain that is very low in THC, the psychoactive ingredient in marijuana, and very high in other cannabinoids — compounds that have received even less study than THC.
The demand led the foundation to open a Northern Colorado branch this month, to better connect and support families north of Colorado Springs. They held their first meeting in Denver last week. Parents chat regularly on a Facebook group.
Increasingly, parents such as Smith have begun speaking out publicly about how cannabis has transformed their children’s lives. Smith started a Facebook page called “Sir Sweetness Paul,” where she tracks her son’s progress — publicly, despite the stigmas, political controversy and uncharted territory.
“Someday, we’re going to look back and think it’s crazy that we had to go through all of this. I think the federal laws will change. So many state laws have already changed,” Smith says.
The red card
Paul was born with a rare genetic disease called STXBP1 that caused him to have upwards of 1,000 seizures a day.
Although Paul was not actively having seizures anymore, doctors warned that they could return at any time. His mom decided to try CBD oil. Maybe it would stave off the epilepsy.
To get Paul’s red card for marijuana, Smith needed to get two doctors’ recommendations. Paul’s hospital refused, as did many other pediatricians, she says. Without the scientific studies, and with the muddy politics, they didn’t want to get involved, she says.
When she decided to wean Paul off prescriptions and switch to cannabis, she says she found herself on her own. There were no guidelines or books to read.
“You have kids going through withdrawals (from prescription medicine) and parents basically doing it on their own, because we can’t get advice from our doctors,” Smith says.
The withdrawals are often as intense as coming off heroin, parents say. Kids clawing at their skin, screaming, hallucinating — and often, these are kids like Paul who don’t understand exactly what is going on and cannot communicate their pain.
Among the doctors who will give red cards to children, only a handful of those will speak publicly about it.
Boulder’s Joe Cohen, with Holos Health, says his practice is not affiliated with insurance companies, so he has nothing to lose. Cohen was an obstetrician-gynecologist for 30 years, before he began studying and prescribing medical marijuana four years ago.
Then, he says he knew “absolutely nothing” about it. His mind-changer: his own wife’s transformation from using cannabis to treat her fibromyalgia.
Today, Cohen says, “I would never want to practice medicine without it.”
The demand continues to surge, he says. He sees about 100 cannabis patients in Boulder every week and is booked two weeks out for an appointment.
The Charlotte’s Web oil has a long waiting list, too. Dispensaries that sell different types of CBD oil have been known to run out, interrupting the patients’ progress. That’s another problem with this unregulated pathway, parents say.
Still, Cohen calls cannabis “the safest drug known to man. Period.”
He even recommends it, in moderation, for pregnant mothers suffering with nausea or insomnia.
“A lot of people think you’re going to get your kids high, like ‘How could you do this? It’s like child abuse.’ When, in fact, it’s the most humane thing you can do for your child,” he says. “You can give someone a non-toxic, non-addictive medicine to replace toxic, addictive medicines. So why wouldn’t you give that to your child?”
Julie Sill, of Boulder, is an advocate for making medical marijuana an option for children. But she also knows firsthand that it’s not the easy path to take.
Sill’s 22-year-old son, Evan, is profoundly autistic and has a seizure disorder. When she decided to try cannabis oil, she says she had to learn how to navigate the complex dispensary system and the various strains. One dispensary ran out of the CBD oil that worked on Evan.
Parents must play around with dosage to find the right amount. Dispensaries are starting to compete with each other, Sill says. And her son’s monthly medicine costs went from $3 a month for pharmaceuticals covered by insurance to $300-plus per month for CBD oil.
“It’s a mess right now,” she says.
Then there’s the criticism.
“A lot of people criticize those of us experimenting with medical marijuana because we don’t know what the outcomes are. No long-term study tells us. We don’t know what we’re doing with our kids,” Sill says. “They say, ‘You people are crazy. You mothers think you know everything. You’re being silly.'”
Sill admits she does not know why or how the cannabis works. But here’s what she does know: Her severely autistic son is talking more. He’s more joyful.
“I can look in his eyes and see him. He looks at me. He’s on. He’s just on. He’s just there. His light’s back on now,” Sill says.
And as a mom, she says she’d sell her soul to the devil for her son, if it brought him even a little more comfort and happiness.
Paul’s progress
In November, 3-year-old Paul could not crawl, hold up his head or talk. He could only eat through a tube.
Within two days of taking the cannabis oil, Paul clapped for the first time in his life.
Then, he looked at Smith and called her “momma” for the first time.
He sat for 30 seconds unassisted.
With assistance, he briefly stood, putting weight on his legs.
His head control dramatically improved. His Facebook page is filled with videos to prove it.
And within six weeks, Paul taught himself how to lean forward in his chair and coordinate his arm to hit a balloon with a baton.
Allison Chilcoat, his preschool teacher at Monarch K-8, says Paul has become more alert and intentional with his eye gaze and his reach.
His private therapist, Vrinda McGinniss, says his “level of engagement has just skyrocketed.” He looks at you when he wants more food or a toy, she says. His attention span has improved, and he is playing with more toys in functional ways, she says.
“It’s a lot of little gains,” McGinniss says. “But it’s all those little things that add up and make a huge difference.”
Beyond this developmental progress, which Smith calls “inch-stones,” although they’re milestones for Paul, a recent EEG revealed positive, measurable improvements in his brain.
The only difference was the oil and getting him off the prescription medications, Smith says.
As a parent of a child with disabilities, Smith says she’s accustomed to the uncertainty of what tomorrow will bring.
“You truly live in the moment. Everything changes so quickly and so fast from moment to moment,” she says.
She knows there’s a long way to go before we fully understand cannabis. She’s excited that Paul is doing so well, but she doesn’t assume all children with his disease will have the same experience. She does not want to make generalizations or give anyone false hope.
But she does knows that today — right now, in this moment — Sir Sweetness Paul is not having seizures, and he’s improving like never before. He has grown more in these past few months on CBD oil than in the first two years of his life, she says.
And for her, that means more than a million studies.
“I don’t know know exactly how or why it’s working,” Smith says. “I can just see that it is.”
Contact Camera Staff Writer Aimee Heckel at 303-473-1359 or heckela@dailycamera.com
