Maggie Selmeski, 4, lives with her parents, Rachael, 34, and Shawn, 38, and younger brothers, Maddox and Miles, in Littleton, Colo. She and her family are what have become known as “medical marijuana refugees,” as they came to Colorado from Tennessee in pursuit of legalized pot. That’s because it wound up being the only effective treatment for Maggie’s form of epilepsy, known as “intractable” epilepsy, which can cause her to have up to 500 seizures a day.
Before making the big decision to move, the Selmeskis had held out hope for a cure and for a normal life for Maggie. But during one of her hospitalizations at just 4 months old, doctors told Shawn and Rachael that their daughter probably wouldn’t live very long.
That point in their lives, Rachael recalls, was “the lowest of the low.”
Thus began a period of trying countless pharmaceuticals in hopes of finding a way to get Maggie’s seizures under control and give the girl a shot a having some quality of life. But doctor after doctor told the couple that there was nothing that could help Maggie, and that all that they could do was love her and accept that her life would not be a long one.
Shawn says that he lost faith in Western medicine in the process. And while he and Rachael continued to seek out effective treatment, he admits now, he was “preparing in my heart for my daughter to die.”
And as Maggie’s condition worsened and she lost all voluntary movement, Rachael’s search for help eventually led her to Cannabis sativa — and evidence that it had been found to reduce and control seizures, even in children.
“We’re not giving our 1-year-old marijuana! Are you nuts?” Shawn recalls telling Rachael when she shared her discovery.
Though Rachael says she was “naive enough” at the time that she had no idea that Cannabis sativa was marijuana, she also says that if you had asked her before then about medical marijuana, she would have called it “a joke,” and “an excuse for stoners to get high.”
They were not alone. Americans, overall, debate whether or not marijuana should be allowed to be prescribed to children for medical purposes even if it were legal. According to an exclusive Yahoo News/Marist Poll, 47 percent of Americans believe parents should have the option, and 46 percent think medical marijuana should not be prescribed to children.
Still, Rachael recalls, “When it became our daughter [in need of medical marijuana] and it was a viable option — and one of the only viable options left — we said, ‘It’s worth it. We’ll give it a shot.’” Since they could not do that in their own state, it meant moving to Colorado when Maggie was 17 months old. There, they could legally obtain and administer to Maggie a drug called Charlotte’s Web — the extract of a strain of locally grown cannabis that’s low in psychoactive THC but high in cannabidiol (CBD), which is known for its medicinal properties.
The impact was significant and fast.
Since making the move from their small, tight-knit Christian community in Tennessee, Maggie has come to now suffer from only 15 to 20 seizures a day — a marked improvement — and has begun preschool. She is also beginning to express herself, which she could not do before, due to the effects of the medical marijuana patch she now wears daily and the Charlotte’s Web oil she takes orally.
“Our 4-year-old has done more drugs than anyone we know,” Shawn jokes of the treatment that has effectively given his daughter a second chance at life. He says the move to Colorado was an obvious one for their family, as they had exhausted all other options.
The Selmeskis aren’t the only ones who have had success in medical marijuana as an effective epilepsy treatment for a child.
Nine-year old Charlotte Figi — the little girl for whom Charlotte’s Web oil is named — found marked improvement in her Dravet syndrome, a form of epilepsy, as a result of medical marijuana, even after other forms of traditional treatment had failed.
A 2016 study published in The Lancet Neurology found that other people with epilepsy have had similar results. The study, by Orrin Devinsky, MD, a neurologist at New York University’s Langone Medical Center, looked at 162 epilepsy patients treated with an extract of 99 percent cannabidiol (CBD), a nonpsychoactive chemical in marijuana, for 12 weeks, on top of patients’ existing forms of traditional medication. With the CBD, seizures were reduced by 36.5 percent — a rate similar to that of existing epilepsy drugs — and two percent of patients stopped having seizures altogether. And despite 79 percent of patients reporting adverse side effects like sleepiness and diarrhea, only three percent of participants dropped out of the study due to adverse effects.
But a subsequent analysis of these findings in The Lancet Neurology (by researchers not involved in the study) warned of the study’s limitations, including the placebo effect and interactions between medical marijuana and patients’ existing medications.
When it comes to existing medical marijuana research, the placebo effect is always a concern: A 2015 study conducted by a team at the University of Colorado found that 47 percent of medical marijuana patients who had moved to Colorado for cannabis-based epilepsy treatment reported improvement. In comparison, however, only 22 percent of epilepsy patients receiving cannabis-based treatment who were already Colorado residents said they saw improvement in their condition. Researchers in the community hope to engage in further blind and placebo-controlled studies on the use of CBD to better control for and understand the real effects of cannabis-treatment for epilepsy patients.
There are still major lessons to be learned from Maggie’s story, according to Heather Jackson, CEO and founder of Realm of Caring in Colorado Springs, Colo. — a nonprofit that provides research, education, and advocacy support for medical marijuana and connects families to Charlotte’s Web and its local community.