At six weeks old, Maggie Selmeski began having multiple seizures. Her parents rushed her to the hospital for tests, and they were told she has intractable epilepsy. This term is given to epileptic patients who do not respond to conventional treatments. Even under a doctor’s supervision and a prescription drug regimen, Maggie was having approximately 500 seizures daily.
Her parents, Shawn and Rachael Selmeski, were heartbroken by the prognosis.
“The doctors were saying, ‘there’s nothing else we can do for her. You need to go home and love her and she’s not going to live very long,” said Shawn.
Left with few options, Rachel began researching alternatives. She discovered that other parents were using cannabis to treat their child’s acute epilepsy.
Rachel was reading about Charlotte’s Web, a high-CBD strain with very low THC, usually concentrated into an orally-administered oil. It has had success treating forms of epilepsy in children that weren’t responding to traditional pharmaceuticals. The strain was named after Charlotte Figi who had hundreds of seizures a day just like Maggie. Charlotte’s parents sought out the Stanley brothers for help finding the right strain that would help with her seizures. It took years of trial and error to hone in on the right combination of cannabinoids and dosing. Once they did, Charlotte’s seizures decreased from over 300 per week to a couple per month.
After reading the research and discussing their options, the Selmeskis made the difficult decision to move to Colorado. They are originally from Tennessee, one of the remaining states that has not passed any sort of medical marijuana legislation, despite efforts to do so.
The term for people who leave their homes, their careers, and their lives to relocate to states with medical cannabis laws have been called “medical refugees.” They are forced to move to pursue a medical marijuana treatment when traditional health care and treatment options fail or are unattainable. Sometimes, these refugees come from states that do have medical marijuana legislation, but the laws are a patchwork quilt that allow for legal cannabis, but not allow for its cultivation or distribution. Even then, the price of medical marijuana can be so high that moving elsewhere is a better financial choice.
Colorado is popular among medical refugees, where medical marijuana is plentiful, easy to purchase, relatively affordable, and legal.
Before, Maggie was conscious, but she had trouble eating, and at times would scream because she was in so much pain. After moving to Colorado and taking Charlotte’s Web for three months, Maggie seizures decreased by about a third. She is now able to communicate with yes and no questions. She attends preschool, something that Shawn thought was impossible due to her epilepsy. Maggie can express herself and is making friends at school.
“She’s just awakened. She has her own little personality to her. She has her ways of communicating, and we’re continuing to unlock those ways of her expressing herself.” said Rachel. “When she starts giggling, she lights up the whole house.”
The Selmeskis admit there is a “major stigma” associated with giving a child what many still consider a gateway drug. But Rachel now sees medical marijuana as medicine. “For us, it was a no-brainer.”
Photo credit: Miracle 4 Maggie
Among the more than 110 medically therapeutic cannabinoids found in marijuana, the big players are THC and CBD. The influence of CBD-only cannabis oils, which cause no euphoric high, is so great that 13 states have passed limited medical marijuana laws targeted only at CBD extracts.
Products like Charlotte’s Web, an increasingly popular pharmaceutical-grade CBD (cannabidiol) extract from Colorado that’s available in capsule, oil, and tincture form, are being used by patients in several states where they are legal. Instead of activists on bullhorns, the loudest — and most persuasive — voices for at least limited medical cannabis legalization are those of the parents of very sick children.
Children with intractable epilepsy, especially those who have tried all conventional pharmaceutical treatments but gained almost no benefit, are using CBD oil to control seizures with amazing efficacy. Unfortunately, CBD is not an end-all cure. It does not work in all cases.
Charlotte Figi & Benton Mackenzie
Charlotte Figi, a nine-year-old Colorado resident, has become the poster child of pediatric medical marijuana. She inspired the creation of a family of CBD-rich Charlotte’s Web products (named by its producer, CW Botanicals, in her honor) to reduce her epileptic seizures. Use of CBD oil has reduced Ms. Figi’s seizure activity by 99.7 percent (before CBD treatment, she suffered between 400 and 1,000 seizures per week).
Benton Mackenzie, a man from Iowa, was suffering from aggressive angiosarcoma, a highly invasive form of cancer. He used high-CBD strains of cannabis to treat his condition — some of which, like Valentine X, provide a 25:1 CBD to THC ratio. For two years, Mackenzie was able to hold his angiosarcoma at Stage 1 though the use of high CBD cannabis.
After being busted for cultivation and incarcerated, where he was obviously deprived of his cannabis medicine, Mackenzie’s cancer progressed from Stage 1 to Stage 4 in only six weeks. Although highly anecdotal, this case is convincing evidence for the power of the CBD cannabinoid to prevent tumor growth and possibly kill cancer cells.
The medical benefit of certain cannabinoids, like CBD, has been clearly illustrated both anecdotally and via limited medical research. The good news is that actual extract products, like Charlotte’s Web, are finally becoming available and legal in many states.
Beyond Extracts: Synthetic Cannabinoids
While cannabinoids are typically isolated via extracts, they have also been synthesized by pharmaceutical companies. In fact, the FDA has approved both Marinol (dronabinol) and Cesamet (nabilone), two forms of synthetic THC.
Unfortunately, these man-made products have garnished mixed — and often negative — reviews from patients with multiple sclerosis, epilepsy, and cancer. This indicates that there may be other chemicals and elements available in CBD oil extracts that simply aren’t present in synthetic versions of these cannabinoids. (It is already understood that certain cannabis terpenes play a role in regulating the amount of cannabinoids that reaches the brain.)
Dustin Sulak, an osteopathic physician and advocate of integrative medicine in Maine, succinctly summarized the attitude of the medical establishment toward cannabinoids and whole plant cannabis medicine:
“Many physicians cringe at the thought of recommending a botanical substance, and are outright mortified by the idea of smoking a medicine. Our medical system is more comfortable with single, isolated substances that can be swallowed or injected.”
“Unfortunately, this model significantly limits the therapeutic potential of cannabinoids.”
Think Outside the Box
When considering medical cannabis, one must think outside the box and not constrain the issue to only whole plant cannabis that is smoked, vaped, or used to create edibles.
In the case of children, a cannabis-derived medicine that provides no euphoric high, is easy to administer, and delivers significant relief for some patients is where medical science and nature work in tandem to provide sometimes remarkable efficacy.
Recently, the Georgia legislature passed a law allowing very limited medical marijuana use in the state. The Haleigh’s Hope Act, which covers a short list of diseases and allows only CBD-rich cannabis oil to be used, offers hope to thousands of sufferers of epilepsy, multiple sclerosis, and other ailments.
Connecticut is considering a similar law. Unlike Georgia, Connecticut already allows limited whole plant medical marijuana (although it does not permit home cultivation, it does provide safe access via dispensaries). Parents of epileptic children, however, typically prefer to avoid the medical cannabis available legally in the state, which sometimes sports a THC level as high as 27 percent.
Although there’s certainly a heavy stigma attached to THC, the cannabinoid responsible for the euphoric high that accompanies use of conventional street marijuana, it’s understandable that most parents would prefer a CBD cannabis oil containing virtually no THC (CBD oils typically have as little as 0.3 percent THC and produce no psychoactive effect).
Marijuana for Children
The Connecticut bill, House Bill 5892 (“An Act Concerning the Palliative Use of Marijuana for Children”), has the sole purpose of helping children gain relief from life-threatening diseases like epilepsy and leukemia. Despite this — and recent media attention on the huge success of CBD treatment for epileptic children in Colorado and other parts of the country — this compassion bill faces opposition from multiple sources. Both Republican senator Toni Boucher and the Connecticut chapter of the American Academy of Pediatrics have vocally opposed it.
Despite the fact that the bill would permit children to be treated only with CBD oil, which has been shown to produce stunningly effective results in many children throughout the country, “Reefer Madness” fears of brain damage from marijuana still persist.
According to Senator Boucher, via a recent press release:
“The brain is still developing when a child is young. Studies show these substances can alter adolescent development and can permanently damage the health and cognitive function of a child’s brain. Children can lose memory and have a total change in their brain development. There is very conclusive medical science around this.”
AAP Slings Prohibitionist Rhetoric
The Connecticut chapter of the American Academy of Pediatrics (AAP) has echoed Boucher’s statements, also exploiting the issue of childhood brain development and the false perception that a cannabis extract like CBD oil inevitably causes brain damage and developmental harm to children.
In an op-ed article for The Connecticut Mirror, AAP representative Dr. Sheryl Ryan wrote:
“Given the negative effects of marijuana on brain development, and cognitive performance and mental health disorders, we should not be recommending and supporting such laws.”
The AAP has gone as far as stating that it believes the use of CBD oil by epileptic and other sick children will increase recreational use of cannabis among all children. Due to the fact that recreational use of marijuana by teens is a cultural and social phenomenon and there is no physical addiction whatsoever, statements like this from the AAP are especially troublesome and preposterous.
Flagrant Disregard for Evidence
The frustrating part of this opposition is that it flagrantly disregards well-publicized examples of CBD efficacy, like that of Colorado resident Charlotte Figi, the nine-year-old girl who went from nearly 400 seizures a week to being 99.7 percent seizure free. This was accomplished with nothing more than a CBD oil extract derived from a special strain of cannabis produced by CW Botanicals, the Colorado company that developed the CBD-based Charlotte’s Web “hemp extract” product, naming it after the patient who inspired its development.
If opponents are successful and able to defeat this bill, parents who have tried literally every conventional pharmaceutical medication and treatment available, but have found no relief, will be relegated to criminals who must deal with the black market.
Politicians and leaders who oppose full recreational legalization of cannabis are one thing. However, influential voices of authority, like Dr. Ryan and Senator Boucher, who so boldly oppose a parent’s desperate effort to give relief to their very sick children, is another. Given what is known about CBD efficacy for childhood epilepsy alone, such actions may be viewed by future generations as obscenely ignorant in the best light and borderline sadistic in the worst.
House Bill 5892 currently resides in the Joint Committee on Public Health in the Connecticut legislature. Will reason, compassion, and science defeat the fear mongering and antiquated prohibitionist rhetoric being offered by the American Academy of Pediatrics and conservative politicians like Toni Boucher? Will the legislature see beyond outdated thinking that forces both children and their parents and caretakers to needlessly suffer?