When Maryland licensed its first medical marijuana dispensaries in 2015, Trent and Tina Stroup believed the move might hold promise for their teenage daughter, Addie, who faces multiple medical challenges including epilepsy and autism.
The Stroups heard through multiple advocacy groups and resources that medical marijuana could be a panacea for people who, like Addie, faced frequent seizures that persisted despite years of medical effort.
“We heard of other families that have used cannabis and have had some success going seizure-free and pharmaceutical med-free,” Trent says. Could medical marijuana help kids like Addie?
Marijuana in Maryland
The medical marijuana industry has exploded since the first Maryland providers were licensed. According to the Maryland Medical Cannabis Commission (MMCC), there are currently 82 dispensaries, 17 growers and 17 processors with licenses. As of August 2019, there were 73,433 patients certified through the state compared to 10,341 in December 2017. That’s a 610% increase in less than two years.
After registering his daughter as a patient with MMCC, Trent searched for a provider from one of more than 500 doctors and medical professionals registered with the commission who can “certify” patients. Certification is not a prescription: Prescribing medical cannabis is illegal under federal law. Doctors and other health-care providers can only recommend or issue certifications.
In order to be certified, patients must be diagnosed with a condition that is, according to MMCC’s requirements, “severe” and for which other medical treatments have been ineffective and for which the symptoms “reasonably can be expected to be relieved” by the medical use of marijuana. Addie met all of those requirements.
But Trent encountered delays during every administrative step in acquiring Addie’s medical marijuana card, and the process took 10 months from start to finish. When Washington FAMILY asked MMCC via email about the delays in Addie’s application, the commission replied that it could not discuss specific cases due to HIPAA concerns.
Addie’s original medical team hadn’t directed them to try marijuana, but for the Stroups, whose child’s seizures were severe and seemingly unstoppable, marijuana’s
reputation found them first.
In the decade-plus since Addie’s diagnosis, Tina and Trent have plugged in to several advocacy groups through social media and the internet, where they and other parents share challenges and solutions for their children’s medical conditions. Communicating with other parents in groups created to discuss epilepsy “always seems to help,” says Tina, “because they’re the ones who have tried” the most solutions.
The Effects of CBD
The Stroups first tried cannabidiol, or CBD. “We’ve seen a lot of things where CBD oil helps people sleep. We’ve been using that for two to three years. It does help her sleep,” Trent says. But it had no impact on Addie’s seizures.
Dr. Anne Comi, a pediatric neurologist at Kennedy Krieger Institute, has been researching the effects of CBD on kids with Sturge-Weber syndrome, a condition that can cause seizures. Children with this syndrome, says Comi, “are at very high risk for epilepsy, strokes and stroke-like episodes.”
Comi uses Epidiolex in her research, which is a brand-name “pharmaceutical-grade, highly purified” CBD product “derived from marijuana.” The amount of THC (the intoxicating chemical that occurs naturally in marijuana) is “miniscule” in Epidiolex. Comi says research into Epidiolex for epilepsy began about 10 years ago and yielded “dramatic” results.
Comi and her colleagues at Kennedy Krieger started studying Epidiolex with kids whose seizures failed to stop despite trying multiple — “sometimes eight to 10” — different medications. In their two published studies, there was a “small subset of patients who had become seizure free, which was remarkable,” says Comi, who saw a huge improvement in the cognitive abilities and quality of life of these patients.
In addition, “Epidiolex reduced seizure frequency by 50 percent in 40 percent of patients,” she says. “That doesn’t seem like a whole lot, but remember: These are patients for whom nothing seemed to help. For them, it was a tremendous help.”
Comi understands that parents in desperate situations might pursue medical marijuana, but she doesn’t recommend it to her patients. “There is a lot of misunderstanding in this field,” she says.
According to Comi, pre-clinical studies have raised concerns about THC on the immature brain. And without product regulation protocols in place, consumers may not know exactly what they’re getting with these products. Whereas every bottle of Epidiolex is formulated to identical specifications of purity, she explains, medical marijuana sold in dispensaries holds no such guarantee.
Trial and Error
The Stroups had been warned by their peers about the trial-and-error involved in finding the correct strain and dose of medical marijuana, but they’d already spent 15 years navigating the trial-and-error of mainstream pharmaceuticals to no avail.
Tina asked about THC in one of her online groups and received “a slew of information” in response, she says. Adding that she was asking from Maryland, the information became even more specific. Other parents began recommending certain strains of marijuana and the dispensaries that offered pediatric discounts.
The Stroups decided to try incorporating THC into Addie’s medical regimen. “We added a little bit in, a very small amount,” Trent says. “It seemed to dramatically, exponentially increase her appetite. We only added 3 milligrams of THC, and her appetite went through the roof.”
Because of this, and because they saw no improvement in their daughter’s seizures, the Stroups stopped using it.
Addie’s parents understand they’re navigating through new territory. “There’s no, ‘This is the amount you take, this is the type you take,’” Tina says. “There are so many different types. You’re just buying one and trying it to see if it works. It’s really been hard.”
Despite the early promise of cannabis in the treatment of seizures, Tina and Trent are learning that, for Addie, cannabis does not yet offer “the magic solution.”
But they aren’t giving up yet. Tina says they’ve recently heard of another strain that might work for Addie. “Trent was going to go to another dispensary and find this other kind that another family suggested,” she says. Hopefully this one does the trick.
By Erica Rimlinger