Pubdate: Wed, 01 Jun 2016
Source: Sacramento Bee (CA)
Copyright: 2016 The Sacramento Bee
Author: Peter Hecht
Note: Chapter 2 of 3

The Silas Project


Moved by Silas Hurd's plight, a marijuana grower who specializes in 
plant genetics combed his seed groups for strains that might calm the 
boy's devastating epilepsy. The family had bouts of relief, but 
inevitably the seizures returned. And a growing political backlash 
cast shadow on their efforts.

Grass Valley - 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.

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, 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.

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.

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.
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MAP posted-by: Jay Bergstrom