Fighting for LifeBy David Downs | Photos by David Elliot Lewis
Medical marijuana more than just “alternative medicine” for an epilepsy sufferer and his dad in Modesto
“Please, please I need a lot of strong prayers for Jayden. He is having really bad withdrawals from the Depakote the last three days and today is the worst . . . I hate doing this alone it gets so overwhelming I’m really wearing out.”
The Facebook page called Jason and Jayden’s Journey shows a cute boy with a smile on his face nuzzling his big dad at Sea World, but the updates are heart-wrenching. The author is Jason David—a 35-year-old, single father in Modesto, living a parent’s nightmare. His 6-year-old son, Jayden, has a rare form of nearly untreatable epilepsy.
When conventional drugs pushed Jayden to the brink of death, doctors pointed David toward medical cannabis, where he found something of a cure and became a global cause célèbre. But Jason and Jayden’s Journey also reveals a brutal reality: All around the globe, a proven, ancient treatment for epilepsy and other intractable illnesses is being denied to patients who need it; most brutally among them, kids.
Numerous studies show some ingredients in cannabis are “highly anti-convulsant,” non-toxic and won’t get you stoned, yet the U.S. government classifies them as dangerous narcotics with no medical use. Though 18 states permit the use of medical cannabis, federal law does not, and the feds are waging a multi-front war on pot that punishes the most vulnerable.
“We act like there’s freedom in America. It’s fake,” David states. “You know what, in California, we voted for medical marijuana. Now it’s getting taken away from us.”
OUT OF OPTIONS
The arc of Jason and Jayden’s Journey is a positive one, partly because of how bad things started out. David and his then-wife had Jayden in 2006. At 4-and-a-half months old, Jayden had his first grand mal seizure—horrifying, life-threatening spasms that only increased in ferocity.
At 1-and-a-half years old, doctors diagnosed, the cute, blue-eyed kid with Dravet Syndrome, a rare, catastrophic form of epilepsy. About 1 percent of Earth’s population has epilepsy—characterized by overactive electrical activity in the brain. There’s no known cure. Jayden’s druggings started.
Topamax. Depakote. Phenobarbital. Stiripentol. Powerful anti-psychotics and sedatives were called upon to calm the infant, but the drugs came with their own side effects. The toddler became doped up, lethargic, developmentally stalled and terrified. By age 4-and-a-half, Jayden was up to 22 pills per day, and had racked up 45 ambulance visits in the previous 12 months. The kid was dying. David’s marriage fell apart, and he became suicidal.
“Seeing your son in an ambulance—it just kills you,” David said.
A Christian looking for a sign from God, he noted a TV item about a teenager expelled from high school for using pot to treat her epilepsy. He started researching online, learning about the plant’s rich medical history and consulted his doctors at UCSF who told him, “If I were you, I’d try anything.”
On June 4, 2011, Jayden received a few droppers full of tincture of medical cannabis extract from Harborside Health Center in Oakland, and had his first seizure-free day since he was an infant.
In the following 18 months, Jayden hasn’t been in an ambulance once.
Records of topical ointments of cannabis used to treat epilepsy date back to biblical days, writes historian Chris Bennett in The Pot Book. Ancient Chinese and Ayurvedic traditions also buttress cannabis’ case against epilepsy. In modern times, evidence also abounds.
Pot’s main active ingredient delta-9-tetrahydrocannabinol, THC, is “overwhelmingly anti-convulsant” in animals, researchers have found. Pot’s second most common active molecule, cannabidiol, or CBD, was shown to calm epilepsy in a small human trial in the ’70s.
While the feds classify CBD as a Schedule I narcotic and block human trials, they also patented CBD in 2003 as a “neuroprotectant” during strokes, noting that high doses of CBD pose no risk of toxicity. Other non-toxic molecules in pot have also been found to be anti-convulsant including: CBN, the terpene linalool, THCV and CBDV. In 2010, GW Pharmaceuticals found that CBDV “strongly suppressed seizures” without the side effects of conventional drugs, and hopes to conduct human trials in 2013.
In the 18 months since Jayden started receiving a tincture of THC and CBD in a ratio of 1:19, his life has turned around. David has to obtain his own supplies of CBD-rich cannabis from growers, deliver it to a tincture manufacturer in the East Bay and get it tested at a cannabis lab before giving it to his son. The droplets don’t get him high. They control his seizures, allowing David to wean his son off the mind-altering anti-psychotic prescriptions. Jayden is down from 22 pills per day to two. The withdrawal from Depakote has been the worst, Jason says.
After each pharmaceutical withdrawal, Jayden grows stronger and more present. In the last year, educators have tripled his speech therapy classes. He’s out of a wheelchair and playing on the playground.
All the while, the year-long federal crackdown in California—and other compassionate states—continues. Dispensaries are closing. Growers are getting busted. David’s self-made supply chain is fraught with uncertainty, but he remains optimistic.
For once, the holidays are filled with possibilities, like a Yo Gabba Gabba concert in Oakland. And very soon, Jayden’s first sentences.
“I just want to hear him say, ‘I love you, Dad.’ I’m ready for that.”