CBD Cannabis Alone Wouldn’t Stop Her Son’s Seizures, So This Mom Is Fighting To Give Him THC

Photo by altanaka.


by Jeremy Daw

on April 14, 2015

Everyone in the courtroom had become well acquainted with Marcy’s* routine by noon break of the first day: every twenty minutes or so, she would stand up, quietly apologize to any other observer nearby, and unlock the wheels on her son’s wheelchair. As the boy began lapsing into spasms, she would quickly wheel him through the double doors of the anteroom into the broad courthouse hallway overlooking downtown Sacramento, California, where she would attempt to quell his seizures with soothing words and hugs. Normally, she would give him his medicine, and hold his hand as his shakes dissipated.

The morning I met Marcy, she didn’t have that option. She and her son were on federal property, and the medicine he needed was federally prohibited cannabis oil.

She told me her son’s story over lunch, after grabbing a jar of the medicine from her car parked across the street. A year before, they were living on the east coast, where she worked as a registered nurse by day and cared for her son by night. She had recently heard about Charlotte Figi, the girl who had found relief from her crippling epileptic seizures by taking the oil of Charlotte’s Web, the cannabis strain bred to produce high levels of cannabidiol (CBD) and low levels of tetrahydrocannabinol (THC) by the Stanley brothers of the Colorado-based Realm of Caring.

Her son suffered from the same rare form of child epilepsy — Dravet’s syndrome — as Charlotte did. She began to think, if Charlotte’s Web could help this little girl, could it also help her son?

“I did my research first,” the nurse and mother told me as she picked at her salad. But after exhausting hours spent on PubMed, she determined that the oil was worth a try — at least from a medical point of view. She, like so many other concerned mothers, began surreptitiously importing Charlotte’s Web extract, blended in coconut oil, to give to her son.

“Did it work?” I asked. I had heard that Charlotte’s Web didn’t necessarily work as well for every epileptic patient as it had for Charlotte.

“Yes, wonderfully.” She paused. “At least, for quite a while it did.”

She also remarked on the quality of the batches she received from Colorado; as a nurse, she understood the importance of proper titration, or dose control, so she made sure to test every batch she received before giving any to her son.

“It was quite consistent. Every batch tested very precisely at 20% CBD and 1% THC, which was just what he needed.”

She pulled a single sheet of neatly-folded paper from her purse. “Until we got this.”

It was a test report from a medical laboratory based in Colorado, reporting on the results of cannabis extract blended in coconut oil. I scanned around the document, looking for any detail out of place.

Her son moaned insistently and flung his hand against his salad plate. I looked up from the document, startled. Marcy took a moment to stoically remove a few vinaigrette-soaked lettuce leaves off the tablecloth.

I looked down at the report on the oil’s potency, then looked back up at her in astonishment. She simply nodded. Yes, I had read that right.

Her latest batch of Charlotte’s Web had tested at 0.00% THC.

“That’s when his seizures came back,” she said.

“He needs the THC?” I asked.

“At least a little bit,” she said. “That’s why we had to move.”

The Reluctant Outlaw

Strictly speaking, Marcy is a felon. Soon after receiving the zero-THC batch of oil from Colorado and watching her son’s condition worsen, she began surreptitiously supplementing his treatment regimen with small amounts of cannabis flower high in THC, and was pleased to see that this small change restored her son’s cannabis therapy to its former potency. Her use of THC-rich cannabis flower to supplement her son’s treatment plan could get her in big trouble with a federal government that still views whole-plant cannabis as Schedule I. Indeed, she speculated during our conversation, the legal status of THC under federal law may have been a motivating factor for the Realm of Caring to switch their Charlotte’s Web oil to a 0% THC blend, thinking perhaps that the move would allow them to ship the oil across state lines without violating federal law (the Realm of Caring did not respond to inquiries for this article).

But ironically, and contrary to popular belief, the CBD in Marcy’s oil is just as federally illegal as the THC. The Realm of Caring admits as much on its website, where in response to the frequently asked question “Is Hemp [sic] oil legal?” comes this commendably candid answer:

“Please sign into your Client Portal account and look under the Client Resources tab for resources regarding how to talk to your doctor, how to use CBD oils, the legality of hemp, the US Farm Bill and more. Even though hemp oil is more generally accepted today, CBD is still a Schedule 1 drug, leading to an additional legal gray area when dealing with CW Products.”

Not all purveyors of CBD-rich “hemp oil” are so honest. Kannaway, a for-profit multi-level marketing LLC often accused of manipulating the suffering of sick children to operate a de facto pyramid scheme (Realm of Caring, in contrast, is a 501(c)(3) nonprofit collective), sells CBD-rich oils wholesale to their “brand ambassadors” for resale, while glibly maintaining on their own website that “Kannaway does not sell or distribute any products that are in violation of the United States Controlled Substances Act (US.CSA). The company does sell and distribute hemp based products.” For over a year, the company defended its erroneous interpretation of federal law on the basis that the federal government had never made any move to bust any purveyor of CBD hemp oil.

That bubble just burst. Citing the distribution of an “unapproved new drug,” the Food and Drug Administration served cease and desist letters on seven hemp oil companies in February; Kannaway, notably, was not one of them. But there can be no question that the mantra of “legal in all 50 states,” the former rallying cry of the hemp oil brigade, has lost its luster.

These sober legal realities have placed Marcy in an ironically uncomfortable position, she explained to me. Months earlier, she had moved herself and her son to Colorado to more easily access both the CBD-rich Charlotte’s Web oil produced by Realm of Caring and the small amounts of THC-rich flower Marcy had to obtain from the state’s dispensary system to make the oil work. But now, even though the retail outlets are closer to hand, the dream of a fully legal health care plan remains just as remote as ever. For all the hubbub about this cannabinoid or that, the only treatment which works for Marcy’s stricken son — all of them, together — keeps her a prisoner to her outlaw status.

All Cannabinoids or None

“If I could only prescribe CBD,” says Dr. Allan Frankel, a renowned expert on treating childhood epileptic diseases, “that would negatively impact 80% of my patients. I add THC if they aren’t seeing any benefits or if they are on the autistic spectrum to help control outbursts.” A Clinical Professor at his alma mater the UCLA School of Medicine for 18 years, Dr. Frankel is no “pot doc” – his insistence on keeping THC and other cannabinoids on the table is thoroughly grounded in science. And although his pioneering work may have been somewhat ahead of the mainstream curve, Dr. Frankel’s experience — as well as Marcy’s — is now thoroughly backed up by leading medical laboratories.

As Project CBD Director Martin Lee notes, a groundbreaking study at Hebrew University investigating the efficacy of pure CBD versus CBD-rich whole plant cannabis found dramatically better results using CBD alongside the other chemicals, including THC, naturally occurring in cannabis resin. The Israeli doctors found that the effectiveness of CBD alone was subject to a “bell-shaped dose-response curve,” meaning that while the efficacy of CBD isolate increased with the size of the dose up to a certain point, once the dose exceeded a certain point further efficacy was subject to dramatically diminishing returns. This means, in practice, that use of CBD therapy is subject to an upper limit, beyond which patients taking it will no longer experience greater relief. In contrast, cannabis which contained high levels of CBD in addition to other cannabinoids was not subject to the dose-response curve; apparently, the synergistic effects of multiple cannabinoids unlock the full power of CBD, allowing patients who take it to finally experience the relief they need.

The Wrong Reform?

I walked beside Marcy and her son as we headed back to the federal courthouse. The judge, Kimberly Mueller of the federal Eastern District of California, had made history when she decided to hold five days of hearings on the question of whether the continued placement of whole-plant cannabis under Schedule I of the Controlled Substances Act was constitutional. Disappointed by the legal half-measures which only permitted her to use half the medicine her son needed, Marcy agreed to testify to Judge Mueller about her experience.

She listed off the cocktail of nightmare drugs her son used to take: “Phenobarbital, Klonopin, Tranxene, Onfi, Versed, Diastat, Valium, Lorazepam, Tegretol, Depakote, L-Carnitine, Topomax, Keppra, Keto Diet with many nutritional supplements, Zonegram, Zaratin, Felbatol, Ritilan, Lamictal, Diamox, Vitamin B6, Prednisone, Clonodine, Gabapentin, Banzel, Stiripentol, Prozac… Before using medicinal cannabis, he tried 50+ different combinations of FDA approved pharmaceuticals which are not approved for children under the age of 12 and have dangerous and scary side-effects; he underwent two brain surgeries, was on a medically restricted diet which was nutritionally incomplete, and was given non-FDA approved orphan drugs. Nothing worked.”

Only one treatment ever did. But while the leading edge of cannabinoid science makes it increasingly clear that the best anti-convulsive therapies combine CBD with THC, American politicians have yet to get the memo. Spurred by the runaway success of Sanjay Gupta’s CNN documentary Weed which sung the praises of CBD and Charlotte’s Web, a rolling wave of state legislatures passed laws to legalize the medical use of CBD – but only in extracts which contained no more than a trace of THC. Utah became the first such state at the end of 2013, and in the blink of an eye Alabama, Florida, Iowa, Kentucky, Mississippi, Missouri, North and South Carolina, Tennessee, and Wisconsin followed suit in a wave of bills often informally (or even officially) called “Charlotte’s Web laws.” Even the U.S. Senate, usually the last deliberative body to the reform party, has now jumped on the bandwagon with the introduction of the Compassionate Access, Research Expansion and Respect States (CARERS) Bill, which besides introducing some badly needed reform to a draconian federal policy would also enshrine the same misguided double standard – while lifting practically all federal restrictions on CBD, the bill would only move whole plant cannabis from Schedule I to Schedule II of the Controlled Substances Act, where it would occupy a dubious position beside cocaine and methamphetamine.

The sponsors of the CARERS bill — Senators Rand Paul, Cory Booker and Kirsten Gillibrand — have been praised for introducing the concept of cannabis reform to a historically stodgy institution; the Realm of Caring has received lavish praise from Sanjay Gupta and others who depict them as courageous altruists breaking federal law to provide for desperate patients. The praise is well deserved in both cases; but as I walked Marcy back to her car, watching her struggle with the frantic spasticity of a sick child running out of time, I couldn’t help but notice that the politicians and nonprofits were benefiting more from Charlotte’s Web and the Charlotte’s Web laws than the very ones — the patients — who needed help the most.

*Marcy’s name has been changed for this story to protect her identity.