Rachael holding Nettie the day she was born, surrounded by her siblings. Photo courtesy of Rachael Garner via Facebook.
A Florida single mother of four announced this week that she believes a strain of cannabis has saved the life of her youngest child, 19-month-old Nettie, after doctors said that no more could be done to keep her alive. “Nettie was going to die,” Rachael Garner told Yahoo Health about her daughter. “I feel 100 percent sure it has saved her life.”
Nettie — who was born with cerebral palsy and hydrocephalus (a buildup of fluid on the brain), which was causing frequent seizures — was hospitalized with two strains of pneumonia in June, when doctors said she would soon die. On July 2, Garner started her daughter on a rogue treatment plan of cannabidiol, or CBD, which is a non-psychoactive, THC-free marijuana compound; it had been sent to her gratis, from California-based provider Stephen Carmen, of Carmen CBD Oils, who found Nettie’s story on Facebook. Garner, a 33-year-old certified pharmacy technician (currently not working) who reads medical journals and was familiar with stories about CBD and seizures, readily accepted. And 24 hours after the first treatment, which involves administering drops under the tongue, Garner noticed a remarkable turnaround in Nettie.
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“I picked her up, and instead of being scared, like she usually is, she smiled,” Garner recalled. “Later, she cooed, and she’s never been verbal.” She added that it was like “a miracle,” she said — particularly since she had lost another child, 10-month-old Raquel, to the same condition about a year before Nettie was born.
While Nettie’s story is still ongoing — she’s been sick with chest congestion lately, although she’s remained seizure free since that first dose, and her family is raising money for medical expenses — hers is just one of many that point to CBD as a viable treatment for seizures. This past year has seen much coverage of families who have flocked to Colorado, one of 23 states where medical marijuana is legal (with more pending), and where there have been reports of CBD helping children with Dravet Syndrome, which can cause constant, life-threatening seizures. As of May, according to the Gazette, 180 children in Colorado were taking the oil, with thousands more on a waiting list.
Still, while anecdotes about CBD’s effectiveness have been extremely hopeful, they seem to remain just that — anecdotes.
Nettie at home. Photo courtesy of Rachael Garner via Facebook.
“It seems to work on some, and seems to definitely not work on others,” Michael Backes, marijuana researcher and author of the forthcoming “Cannabis Pharmacy,” told Yahoo Health. “The long-term developmental effects on children are not well understood, so while it may relieve symptoms now, we don’t know what it might do down the line.” Backes recognized that “desperate parents with desperately ill children are desperate for relief,” but added, “I just want to make sure no kids are hurt down the road. Even though it’s not psychoactive, CBD is a powerful drug.”
Studies are underway, though, and preliminary findings have been “encouraging,” Backes said. Orrin Devinsky, an epilepsy expert with the NYU Langone Medical Center in New York, is a leading researcher in the field. In May, he co-authored a study in the journal Epilepsia that found, “Pure CBD appears to be an ideal candidate among phytocannabinoids as a therapy for treatment-resistant epilepsy.” He made a case for further research, noting it would make sense to “systematically investigate the safety, pharmacokinetics, and interactions of CBD with other antiepileptic drugs and obtain an initial signal regarding efficacy at different dosages. These data can then be used to plan double-blinded placebo-controlled efficacy trials.”
In Colorado Springs, Colorado, Dr. Margaret Gedde is a physician who has been tracking the young CBD patients there. Of the 47 patients who started taking the oil this fall, 28 percent reported more than 80 percent reduction in seizures, she told the Gazette. Another 49 percent reported some reduction in seizures and several other benefits, while 23 percent stopped using the oil because it was either ineffective or detrimental. “This is what is called anecdotal evidence, but it is also very real,” said Gedde. “We have 78 percent of patients benefiting from this. Often it allows them to get off more dangerous medications. Clearly it has a role in treating epilepsy.”
Carmen, Rachael’s supplier, is also a big believer in the anecdotes — so much so, in fact, that he has dedicated his life to getting the oil to people who need it. While living in Utah last year, he tried to get CBD for his father, who had liver cancer, because he had read about it being an effective treatment, he told Yahoo Health. But it was impossible to get in his state, and after his father died, he said, “I was so infuriated that I packed everything I had and moved to California.”
That’s where he said he met a biochemist who makes the oils — at a cost of $97.50 per 10 ml, which equates to about a one-month supply — and the two formed a nonprofit. Now, in addition to selling the product, Carmen logs onto Facebook daily, searching for families who are in need, like Nettie’s, to whom they can donate the treatments. He said they’ve seen successes with many illnesses, from lupus to cancer, adding, “It blows my mind every day.”
In Florida, where the Garners live, citizens will get to vote on the issue of legalizing medical marijuana through a ballot measure in November. But Gov. Rick Scott signed the Charlotte’s Web bill into law in June, legalizing the use of CBD to treat conditions from epilepsy to Lou Gehrig’s disease. The bill was named after Charlotte Figi, a 7-year-old Colorado girl who had her seizures effectively treated with the oil. A bipartisan bill of the same name was introduced on July 28 to the U.S. House of Representatives, possibly paving the way for CBD to be legal on a national level.
Still, the Florida law won’t go into effect until Jan. 1, 2015, so instead of waiting it out, Garner chose to accept Carmen’s offer. They both believe she will be protected under the law on the grounds of religious freedom, as she belongs to a Native American church that regards cannabis as “a sacrament.” And Garner’s belief in the powers of the oil is too strong for her to give it up anyway. “I’m not going to lose her to this, I’m just not,” she said. “I’ve already had one casualty.”