Aggressive soft-tissue sarcoma had taken his wife in 2000. Colon cancer claimed his father four years later.
Brad Peceimer, a former aerospace manufacturing engineer, grew marijuana and produced medicinal remedies for both of them, to help relieve the nausea and discomfort caused by their treatments. After their deaths, he kept cultivating, fascinated with plant science.
In his cluttered garage, he cloned cannabis varieties for a medical marijuana collective called Grass Roots Solutions, eventually creating his own seed library. He planted marijuana outside his earthen domed home in the Alta Sierra community and at a second site on San Juan Ridge, a forested enclave that a generation ago was the birthplace of Nevada County’s pot culture with an influx of hippies, naturalists and other free-thinkers.
When he got the call in mid-2014 to help identify a specific type of marijuana treatment for a 7-year-old boy named Silas Hurd who was wracked by daily seizures, he was eager to take up the challenge.
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But he also knew the Silas project was akin to a moonshot. Contrary to popular perception, not all weed is created equal. There are thousands of marijuana strains, from different cannabis families, and perhaps just as many ways to make it into medicine. And the strictures of federal law mean most research into potential pot remedies is being done by independent practitioners like Peceimer, with little oversight or regulation.
Still, said Peceimer: “I wanted to develop the Willy Wonka golden ticket for this child.”
The request carried emotional resonance for Peceimer, now 58. This time, marijuana wouldn’t be used to ease the suffering of someone who was dying. It would be used to help a little boy live.
The time pressure was immense. Silas was plagued by Lennox-Gastaut syndrome. Medical supervision by neurologists specializing in childhood epilepsy, as well as anti-convulsive prescription drugs, weren’t doing enough. Some doctors were unsure if the boy would make it to his teenage years.
The day Peceimer met Silas, “he had three seizures in front of me in approximately one hour,” Peceimer said. “It was a dramatic, eye-opening experience. I’ve never seen impacts of that type on a child. It was a horrible thing to watch.”
Silas’ parents, Forrest and Nicole Hurd, feared that one day a severe epileptic episode – traumatic events in which Silas convulsed, foamed at the month, turned blue and lost consciousness – would kill him.
“We had prepared ourselves and come to terms with it,” Forrest said. “We were watching him slowly seize to death in front of us, and there was nothing we could do. I don’t know how to explain how horrible this was. That was the existence we were living.”
Peceimer combed his genetics collection of 30 cannabis seed groups. He looked for low-psychoactive breeds with high levels of cannabidiol, or CBD, a compound that has shown medicinal promise in some early studies. These breeds were different from most other types of commercial cannabis. They contained relatively little THC, the ingredient that causes people to feel high after using marijuana. He thought he could match these strains to produce what he believed would be safe medicinal tinctures for a fragile child.
In his garage lab, Peceimer went as far as calculating plants’ mix of terpenes, organic molecules said to give pot its smell and taste as well as affect its medicinal quality.
After identifying the strains he thought could help, Peceimer and other Grass Roots Solutions members began planting marijuana for Silas, with varieties ranging from ratios of 30-to-1 CBD to THC to more balanced mixes. They grew the strains outdoors with the belief that this type of marijuana does better under the full spectrum of sunlight. CBD-rich plants can be fragile, they said, and often won’t flower with medicinal buds indoors.
Producers for the collective took the buds and leaves and ground them up. They ran ice-cold solutions of organic grain alcohol through the cannabis. They evaporated the alcohol in a two-step heating and straining process, leaving medicinal resins, which were diluted with olive oil.
The first few tinctures appeared to do little more to ease Silas’ unyielding seizures than remedies Forrest and Nicole had purchased at marijuana dispensaries in Sacramento and the Bay Area. But his parents did see something that gave them hope. Silas’ speaking ability continued to improve, still simple in structure but more playful and expressive. “He was able to speak more clearly,” Nicole said.
Grass Roots Solutions produced more varieties. Forrest tried each one first, swallowing an entire dropper full, vastly more than what he would consider giving Silas. Forrest said he never felt any psychoactive effects.
Still searching for the right combination, Peceimer crossbred a marijuana strain called St. Valentine, named for the patron saint of epilepsy, with another plant called Medi-Haze. According to Leafly.com, a website listing cannabis strain characteristics, St. Valentine has a 25-to-1 CBD-to-THC mix and Medi-Haze has a roughly 1-to-1 ratio based on tests at industry laboratories.
Peceimer called the new variety Medi-Haze B and gave a vial to Forrest. He tried a dropper and felt stoned a short time later. “It was definitely a heady one, and that was not good,” he said.
I’m not ready, the father told himself, to give that one to my kid.
Hiding behind the law
The Silas project was unfolding in a place known for its towering ponderosa pines, charming bed-and-breakfast inns and eclectic art and music scenes. Home to 100,000 residents, Nevada County is a destination for retirees, for whom the county’s other culture – marijuana – is a turnoff that many see as undermining the local serenity and quality of life.
The county sheriff, Keith Royal, first elected in 1998, had been an opponent of California’s Proposition 215, which in 1996 made California the first state to legalize marijuana for medical use. Royal saw the law as a ruse for people wanting to make money by producing pot for stoners who didn’t have legitimate medical needs.
Over the years, Royal said, what was happening in Nevada County proved his argument.
In 2012, Nevada County supervisors approved pot-tolerant rules allowing outdoor medical marijuana cultivation of 75 square feet of cannabis – or up to six plants – and 100 square feet of indoor growing on parcels of 2 acres or less. The limits tiered up by acreage to 1,000 square feet of outdoor gardens on properties 20 acres and larger.
The sheriff said the rules heightened Nevada County’s lure as a cannabis-welcoming county. Newcomers were buying up real estate for secluded marijuana plantations. Massive fall harvests didn’t just provide for the medical marijuana market – Nevada County buds were being illicitly trafficked to other states where street sales could fetch top dollar.
Pot flowing out of the county was being intercepted at shipping facilities for United Parcel Service and Federal Express, Royal said.
“It was all about making money. It was all about recreational (marijuana),” the sheriff said. “Nobody played by the rules. It was a right-to-benefit philosophy: ‘I’m going to grow as much as I want.’ ”
The Nevada Irrigation District complained of marijuana growers illegally siphoning water from a network of canals and flumes dating back to the gold-mining era. Its staffers reported streams and rivers littered with hundreds of butane cans. The cans were tossed by pot processors who used the flammable chemical solvent for producing cannabis hash oil and waxes, known for mind-numbing psychoactive effects.
It was all about making money. It was all about recreational (marijuana). Nobody played by the rules. It was a right-to-benefit philosophy: ‘I’m going to grow as much as I want.’
Nevada County Sheriff Keith Royal, on marijuana growers
Board of Supervisors Chairman Dan Miller said residents also were unnerved by the annual influx of “trim-migrants.” During the fall months, county homeless services were strained by people who flocked to the area in hopes of earning hundreds of dollars scissor-cutting unwanted leaves from marijuana buds to prepare them for sale.
“People were starting to feel the negative impacts during the grow season,” said Miller, adding that outdoor pot gardens spread from the secluded woods to residential backyards in quaint historic towns, including Grass Valley and Nevada City.
In November 2014, Nevada County voters rejected a more liberal cultivation ordinance backed by medical marijuana advocates. Measure S would have expanded allowable square footage for marijuana planting, permitting 12-plant residential gardens for medical users and up to 99 plants on large agricultural and timber properties. It lost by a resounding 66 percent to 34 percent margin.
Grass Roots Solutions members maintained that it took large quantities of CBD-rich marijuana buds and leaves to make their medical tinctures, with a pound of cannabis producing 50 milliliters – or 10 teaspoons – of formula. Once diluted with olive oil, the amount would total 140 teaspoons of medicine. Royal argued the tinctures could be made from just a fraction of the marijuana the collective said it needed.
In September 2014, Peceimer’s Alta Sierra home had been raided by a sheriff’s narcotics team. Royal said a helicopter overflight clearly showed Peceimer was growing marijuana well in excess of county square-footage limits. Though Peceimer was a leading Measure S supporter, Royal said the raid had nothing to do with politics. At the time, the sheriff wasn’t aware of the group’s work with Silas.
Officers cut down 12 plants at his home, including six he was growing for Silas, and destroyed his garage cloning lab, the nerve center for the medicinal project, Peceimer said. “We had lost all the plant genetics that we had been working on for him,” he said.
Peceimer was booked into Nevada County jail on a felony count of cultivating for sale and a misdemeanor charge of resisting arrest. He made bail the next day, only to face a separate Nevada County abatement notice for his San Juan Ridge property, where gardens totaled 36 plants, including another six for Silas, he said. Peceimer ended up destroying the plants, which had yet to flower.
He argued that he was growing legally under California medical marijuana law. Criminal charges against him would be dismissed in 2015. But the raid unnerved members of Grass Roots Solutions and left them short of plants for the Silas project.
“I was distraught,” Peceimer said. “It was truly heartbreaking.”
‘A whole new outlook’
The raid preceded a wrenching time for the Hurd family. In December 2014, Silas suffered a grand mal attack in a special education classroom at Williams Ranch Elementary. An ambulance took him to an emergency room.
Afterward, the school told the family that its staff was prohibited from administering a prescription that doctors provided the family as an emergency antidote to help bring Silas back from devastating seizures. The anti-convulsion drug Ativan – also known as Lorazepam – was designed for attacks related to Lennox-Gastaut syndrome. But it wasn’t federally approved for use with children.
The Hurds withdrew Silas from the school. Forrest quit his job at Milhous Children’s Services to care for him full time. Nicole kept her job as a recreational coordinator since she was the only parent with health insurance.
They urgently set an appointment for Silas with doctors at the Pediatric Epilepsy Center at UC San Francisco, fearing their son might require long-term hospital care.
In addition to Ativan, Silas was taking an anti-epilepsy medication, Depakote, that neither Forrest nor Nicole saw as helping. The path forward wasn’t clear. In cases where “the first two or three conventional medications are ineffective” for childhood seizures, said Dr. Joseph Sullivan, director of the UCSF pediatric center, the likelihood that any of “the remaining 20 medications will be the magic bullet” is exceptionally rare.
So Forrest got back in touch with Patty Smith, Grass Roots Solutions’ president, to see if the growers still cultivating strains for Silas had any new tinctures to try. They didn’t.
Forrest still had the Medi-Haze B, the more potent CBD-THC tincture he had stashed away earlier. He worried it might impair Silas. But Forrest also had seen his son disoriented, sick and lost amid the narcotic effects of conventional pharmaceutical treatments. Desperate to curtail the seizures, he came to see cannabis as a safer option.
Forrest decided to give him the formula – but three drops, far less than the full medicine dropper, 28 droplets in all, that had made the dad feel stoned when he tried the mixture.
That day, for the first time in more than three years, Silas’ body was peaceful – no shaking, freezing or convulsing.
They continued giving him the tincture twice a day, increasing the dosage to five droplets. When the parents brought Silas to his appointment at UCSF in February, he had just completed a seizure-free streak of five days. An attending physician noted in his paperwork that the child showed “improved speech and language.” Sullivan observed that Silas had perked up to the point of interacting with his physicians – and cracking jokes.
In the spring of 2015, Silas got sick with the flu and couldn’t hold down food. Forrest stopped administering the Medi-Haze B for several days. His seizures returned, then abated after Forrest started again with the tincture.
The fact that he went four months without any tonic-clonic seizures tells me that this treatment is having some impact ... I think it’s very clear that cannabidiol can help with seizures in some patients.
Dr. Joseph Sullivan, director, UC San Francisco pediatric epilepsy center
Days and then weeks passed. Silas went four months into the summer of 2015 before having a single seizure. For a wonderful period, the formula indeed seemed to be the golden ticket.
“We were coming to terms with losing our kid and, all of a sudden, he’s not having seizures,” Forrest said. “And very quickly, he is speaking and moving around and talking again. I had a whole new outlook on Silas’ life – and his chances for life.”
Sullivan took particular note that Silas’ worst attacks, his devastating tonic-clonic seizures – the grand mals – had totally disappeared.
“The fact that he went four months without any tonic-clonic seizures tells me that this treatment is having some impact,” Sullivan said. “If he was having weekly seizures of this larger type and goes four months with none, that’s significant. I think it’s very clear that cannabidiol can help with seizures in some patients.”
Through 2014, researchers at UCSF, including Sullivan, had conducted a clinical trial with 25 patients ages 1 to 18 whose conditions had failed to respond to three or more anti-epilepsy drugs. The researchers were testing a 99 percent pure CBD formula called Epidiolex. It was being developed by a British company, GW Pharmaceuticals – the first step in a long process to evaluate it for potential approval for prescription use.
A broader Epidiolex study enrolled 214 patients – ages 30 and under with seizure syndromes that included Lennox-Gastaut and Dravet – in clinical trials at UCSF, New York University, Wake Forest School of Medicine and children’s hospitals in seven other states.
Silas wasn’t part of the study, published in the March edition of The Lancet Neurology, that showed that patients with Dravet syndrome who were given Epidiolex had a median 49.8 percent reduction in monthly seizures and that patients with Lennox-Gastaut had a reduction of 36.8 percent.
Sullivan said about half the subjects in the UCSF group showed no change in seizure activity. He saw promise in the research, but was hesitant to say what the results meant for Silas or any child relying on nonstandardized cannabis remedies produced by individual medical marijuana growers.
He said researchers had yet to develop a protocol “to do a trial on some of these artisan-produced cannabis derivatives.” He also said the medical community had little data on the potential side effects on children of even seemingly low doses of THC, a component in the tincture that seemed to bring relief to Silas but that his father worried might make him stoned.
“This is the most frustrating thing about the work we do,” Sullivan said. “Our crystal balls are exceedingly cloudy.”
A lonely journey
Temporarily freed from the seizures, Silas seemed to re-emerge, seeking to communicate with his family and others by acting out bits from cartoons and movies. “It was like pulling him out of a fog,” Nicole said.
But by fall 2015, the seizures had returned. They were at a lower frequency than before the introduction of Medi-Haze B, but still worrisome. Forrest increased the dosage to 10 droplets administered twice daily. He said he monitored Silas “and he never got close to impairment.” Again, the episodes subsided.
Silas returned to a school setting in late 2015. His parents took him twice a week to Ridgeline Pediatric Day Health Center, a licensed Grass Valley health facility providing skilled nursing supervision and cognitive skills activities for “medically fragile” children. There, he would bolt from activity to activity – painting, hitting a ball with a bat, running outside – an 8-year-old with the cognitive abilities of a much younger person, but still the exuberant child the Hurds remembered him being before the epilepsy.
Around the arrival of the new year, the Medi-Haze B again seemed to lose its effectiveness. Silas began having generalized seizures and multidimensional attacks known as complex partials that caused lip smacking, arm flailing and disorientation. But he wasn’t having the grand mals that turned him blue and knocked him out. Total attacks remained down by as much as 90 percent, Forrest said.
Still, the resumption of the attacks disappointed not only his family but the members of the Silas project. When the child “seized up again, it was like popping a balloon with a pin,” said Smith, of Grass Roots Solutions.
Forrest continued dosing Silas with the Medi-Haze B. And he started weaving in additional varieties produced by Grass Roots Solutions, including tinctures from CBD-dominant plants called Cannatonic and Harlequin. The combinations seemed to slow – but not stop – the seizures.
He saw his family treading a lonely journey, guinea pigs in an alternative medical experiment with an uncertain outcome.
What is CBD?
Cannabidiol, or CBD, is one of an estimated 80 active compounds – called cannabinoids – that are found in marijuana plants. Unlike marijuana’s principal psychoactive ingredient, tetrahydrocannabinol or THC, CBD doesn’t make people high or produce intoxicating effects.
The interest in potential therapeutic effects of CBD-rich marijuana strains has been growing in response to attention surrounding the use of tinctures in children with intractable seizure disorders, including Dravet syndrome and Lennox-Gastaut syndrome.
According to the National Institute of Drug Abuse, case studies and anecdotal reports suggest that CBD may be effective in treating drug-resistant epilepsy. But research is considered limited.