Pubdate: Tue, 31 May 2016
Source: Sacramento Bee (CA)
Copyright: 2016 The Sacramento Bee
Author: Peter Hecht
Note: Chapter 1 of 3

The Silas Project


After a severe form of childhood epilepsy left their son, Silas, 
"developmentally frozen in time," Forrest and Nicole Hurd went on a 
desperate search for cures. Traditional medicine failed them, so they 
ventured beyond it. Could an enterprising medical marijuana 
collective hold the answers?

Penn Valley - Their morning ritual was nearly complete: Breakfast was 
finished, teeth brushed, shoes on.

Let's go. Now. Or we're going to be late.

Forrest Hurd was preparing to shuttle his son to preschool and his 
daughter to kindergarten when something caught his eye. It was his 
boy, Silas, staggering in circles, eyes seemingly fixed on some 
distant horizon.

Forrest thought Silas  nearly 4, verbal and already a devotee of 
"Star Wars" and video games  was messing around.

"Silas, grab your backpack," Forrest said.

No response. Just the off-kilter looping, moving from the hallway to 
the kitchen.

"Hey, Dad's talking," Forrest said, more forcefully this time. "I 
need your attention."

Nothing. No recognition of his father's words. Not even a flinch.

Forrest walked over and put his hands on his son's shoulders.

"Silas, can you hear me?"

The boy stared with a haunting emptiness. He smacked his lips as if 
gasping for air. He vomited on his father's shoes.

"I helped him to the couch," Forrest said, remembering the episode 
from five years ago, pain still registering on his face. "Then he 
just laid down and went to sleep."

Forrest and his wife, Nicole, took their son to the family doctor, 
who said the boy likely had suffered a seizure. They could strike and 
never occur again, the couple were told. Silas might grow out of them.

He didn't.

"It was a matter of weeks, not months, before he was having them 
every day," Forrest said.

Forrest and Nicole began charting his episodes. Some were small and 
short-lived, consisting of lip smacking, facial tics or arm jerks. 
Others were bigger and lasted longer. His body would twitch, flail or 
go rigid. He would vomit, fall or pass out. Many times, they clutched 
their son as he quaked, his face turning blue from lack of oxygen. 
They feared he was dying.

The family soon was counting as many as 200 seizures a month. 
Paramedics had to be called to Silas' school. Once Nicole arrived 
after being notified of an especially traumatic episode, getting 
there just in time to catch her son as he dropped.

As the seizures increased that first year, Silas' ability to 
communicate deteriorated, as did his connection to the world around 
him. He struggled to put together simple sentences.

He became "developmentally frozen in time," Forrest said, his 
cognitive growth stunted by an intractable form of childhood epilepsy 
that includes a rare and life-threatening condition called 
Lennox-Gastaut syndrome.

The diagnosis would set the family on a journey that has tested their 
courage and stretched their definition of medicine. In the ensuing 
years, they would travel from doctors' offices in Sacramento and San 
Francisco to unlicensed labs on the fringe of folk medicine and 
emerging marijuana science.

They would encounter allies and adversaries, people working for and 
against what Forrest and Nicole thought was best for their son. And 
they would experience startling changes in Silas, who recently turned 
9 and whose health has been trending toward improvement for more than 
a year, albeit with some disheartening setbacks.

On a recent spring afternoon, Silas was running about, blurting out 
lines of dialogue from his favorite videos.

"Look out, you monster menace!" he repeated from an episode of "Scooby-Doo."

"Freeze, Joker!" he continued, borrowing from Lego Batman.

Sitting on the back deck of the family's rented home in Penn Valley, 
Forrest gave tribute to a community of marijuana growers in rural 
Nevada County for the uptick in his son's health. After traditional 
prescription drugs failed, members of a medical marijuana collective 
called Grass Roots Solutions took up Silas' cause as part of an 
ongoing experiment. They planted specific strains for him and crafted 
cannabis tinctures in a effort to deliver relief.

The solutions are produced by gleaning oils from the plants. But 
rather than being loaded with THC, or tetrahydrocannabinol  the 
ingredient that causes people to feel stoned  this marijuana was low 
in THC and rich in CBD, or cannabidiol, a nonpsychoactive ingredient 
that, according to limited studies, may have medicinal benefits.

The first tinctures failed to slow Silas' attacks. But after months 
of trial and error, the family found reason to hope. Silas' use of 
other locally grown formulas, provided without charge by the 
collective, led in the spring of last year to his first seizure-free 
weeks in more than three years.

Seizures are caused by abnormal electrical activity in the brain and 
disorders in the nervous system. Traditional medicines can help some 
people with epilepsy but not others. The exact relationship between 
seizures and CBD is unknown. Research is limited in part because 
marijuana, while legal to use in some states, remains an illicit 
substance under federal law. The liquid tinctures that Silas ingests 
are made in makeshift labs, unregulated by the FDA. There are no set 
standards for formula compositions; no official guidelines for 
dosages; no definitive studies on side effects.

Nevertheless, Silas' neurologist at UC San Francisco, Dr. Joseph 
Sullivan, calls Silas' seizure reduction and improved alertness 
promising and has encouraged the family to keep up the cannabis 
treatments while continuing regular medical care and supervision.

"We are chasing a moving target," said Sullivan, who says Silas has 
characteristics of both Lennox-Gastaut and a more generalized form of 
epilepsy. "Seizures are very unpredictable."

The saga of Forrest and Nicole Hurd follows that of scores of parents 
in California, Colorado and other medical marijuana states who have 
turned to unregulated cannabis remedies for severe childhood 
epilepsy. Desperate and dogged, these families are combining limited 
scientific research with promising anecdotal stories, essentially 
resorting to at-home trials of marijuana's effectiveness in a search 
for a solution.

Recent clinical studies undertaken for a British pharmaceutical 
company by university researchers, including Sullivan, in San 
Francisco, New York and elsewhere, noted significant seizure 
reductions after use of a CBD cannabis formula for some children who 
suffer from intractable forms of epilepsy. Silas wasn't part of that research.

In a separate 2014-15 survey of 75 Colorado parents using locally 
produced marijuana tinctures for children with epilepsy, more than 
half reported seizure reductions and a third noted improved alertness 
and language ability. But nearly half of the children in both the 
clinical trials and the survey showed no improvement. Thus, Sullivan 
says, more study is needed.

But when it comes to medical marijuana, politics is as central to the 
discussion as health. As the Hurd family pursues an herbal solution 
or, at least, sustained bouts of relief  for Silas, their partnership 
with local marijuana growers has become a political lightning rod in 
Nevada County.

In January, the Board of Supervisors passed an ordinance banning all 
outdoor marijuana cultivation and any commercial cultivation in the 
county, a former hippie haven long renowned for pot growing. Sheriff 
Keith Royal says Nevada County has become a destination for criminal 
marijuana traffickers who are planting vast pot farms in backcountry 
woods, stealing water, fouling the environment and endangering communities.

A county ballot measure set for June 7  Measure W  seeks to reinforce 
the pot cultivation ban. If passed, it would prevent future 
supervisors from repealing it without another vote of the people.

Evoking Silas' name, Forrest has emerged as a public advocate for his 
son and the leading spokesman and legal plaintiff challenging the 
cultivation ban and the proposed ordinance. He insists the new county 
rules allowing only small-scale indoor grows with lighting 
restrictions will deprive Silas of the herbal medicine that has shown 
the greatest success in freeing him from his agonizing medical condition.

In appearances before the supervisors, Forrest has pleaded for a 
cultivation exemption for children with epilepsy such as Silas.

Political factions in the county are bitterly split over whether the 
new rules will harm Silas or do no such thing. The Nevada County 
Republican Party recently issued a statement saying "commercial 
growers are using an unfortunate child as a publicity stunt" to 
defeat Measure W.

The sheriff expresses sympathy for the Hurd family but bristles at 
medical marijuana advocates using "a poster child" to protect what he 
describes as an unlawful industry of recreational pot growers whose 
cause "isn't about medicine  it's about money."

Seated amid the shade of black oaks on his family's back deck, 
Forrest says he is no shill for profiteers. He insists his foray into 
marijuana politics is centered on the cause of a medically fragile 
child  and a family's determination to care for him.

'Is this my child?'

Silas was born healthy and plump  9 pounds, 11 ounces  on May 20, 
2007, in Modesto.

His mom worked as a lifeguard through her teens and later became a 
certified lifeguard trainer for the Red Cross. His dad was a 
guitarist and vocalist in a local band called the Kung Fu Conspiracy 
and later adorned his left arm with tattoos of Martin Luther King Jr. 
and Mahatma Gandhi.

Their limited experience with pot involved some social tokes in their 
early 20s, years before they had children.

Forrest, 36, went on to become a mental-health program specialist. In 
Nevada County, where they moved in 2010, he worked for Milhous 
Children's Services, a private group that develops treatment regimens 
for children and adolescents with behavioral challenges.

Nicole, also 36, worked as a nursing assistant in the cardiac 
rehabilitation unit at Sierra Nevada Memorial Hospital in Grass 
Valley before taking a job as recreational coordinator for the Lake 
of the Pines Association, a gated Nevada County community.

At home, the parents focused on the development of Silas and his 
older sister, Abbigail.

For his first few years, "Silas hit all of his developmental 
benchmarks," Forrest said. He was not just walking but running around 
the house at 9 months old, and talking as a 2-year-old.

Looking back, though, Forrest realizes there were troubling signs. 
After Silas' third birthday, Forrest started his son on a video 
flash-card program. Abbigail had excelled at the reading game for 
toddlers that featured zoo animals. At 3 1/2 , she could identify 
words such as "chimpanzee" and "orangutan." But Silas couldn't 
identify words as simple as "cow" or "smile."

"He never got close," Forrest said. "I talked to him, and he had a 
hard time giving me a response. He wanted to very badly. But he 
didn't understand what I was saying."

In the spring of 2011, Silas suffered his first known seizure. The 
attacks multiplied in number and type. He had myoclonic seizures, 
with arm jerks and facial grimaces. He had tonic seizures, his body 
stiffening dramatically. He had atonic seizures, with a loss of 
muscle control that caused him to fall. His parents logged them all 
at the urging of doctors. They reached 200 attacks a month and 
continued to climb, often with different seizure types striking in a 
single sequence.

By the age of 5, Silas was having clusters of attacks that lasted 10 
or 15 minutes. That's when he had his first grand mal seizure and 
entered a traumatic new phase.

Silas was in the living room when Nicole heard "a guttural sound ... 
a sound that as a mom you realize your kid is in trouble." Recounting 
the episode years later, her voice cracked with emotion.

"You go running into the room. He is on the couch having a seizure, 
and it is getting worse quickly. You see him starting to convulse. 
You see his whole body freeze up. You see foam coming out of his 
mouth. You see him looking up and to the side. He is not there. And 
he is starting to turn blue. He is not breathing.

"So you try to keep him alive, and you roll him onto his side into a 
recovery position to keep his head from hitting anything, and you 
just kind of wait it out to see if it is going to change. And you're 
having to grab the phone in case we need to call 911."

No ambulance was summoned that time. Silas came to. His breathing 
resumed. But his diagnosis wasn't good.

Doctors in Sacramento specializing in childhood neurology said Silas 
was stricken with Lennox-Gastaut syndrome and suggested a potentially 
grim future. He faced the risk of sudden epileptic death, from 
suffocation caused by impaired breathing during an attack or 
catastrophic falls.

"They said, 'Your son may not live five years  or maybe he'll live to 
10 years old, but he probably won't live to 20," Forrest said.

Silas also was diagnosed with developmental issues, including autism 
spectrum disorder and intellectual disability.

At home, Abby learned to run for the prescription medication when 
Silas seized up. Sometimes, her brother's relentless attacks left her 
sobbing. "I'm a little lonely sometimes," Abby said.

Traditional prescription medications intended to reduce overall 
seizure frequency, including Keppra, Topiramate, Trileptal and 
Tegretol, seemed to have little effect. Only one medication  an 
anti-convulsant called Ativan  did anything to help. Still, Silas was 
averaging three grand mals a month, events that left him disoriented 
for hours afterward.

His seizure episodes eventually climbed above 500 a month. And their 
physical toll wasn't the only worry. Forrest and Nicole were 
concerned about the side effects of the drugs he was taking.

"The behavioral stuff was so dramatic," Nicole said. "I wondered: Is 
this my child? The seizures didn't stop, and there was tantrum-like 
screaming and crying and falling on the floor, nonstop. Some 
medicines made him unable to sweat and he would overheat. Another 
made him puffy."

Amid extensive medical consultations, and with thousands of dollars 
in bills for Silas' care, his family scoured the internet and sought 
out advice for therapies that might help.

In 2013, Dr. Sanjay Gupta produced a CNN documentary on a 6-year-old 
Colorado girl, Charlotte Figi, who had been plagued by debilitating 
seizures since she was 3 months old. Her family reported dramatic 
improvements after Charlotte began taking droplets of a 
nonpsychoactive cannabis tincture that was grown and refined by 
Colorado medical marijuana cultivators. The specially bred CBD-rich 
plant was dubbed "Charlotte's Web."

A year later, Gupta followed up by broadcasting the story of New 
Jersey parents, Meghan and Brian Wilson, who migrated to Colorado to 
get cannabis treatments for their 3-year-old epileptic daughter, 
Vivian. They also reported marked progress in her medical state.

"Our phone started ringing off the hook with calls from our friends," 
Forrest said. They all said the same thing: Those kids remind us of 
Silas. Forrest reached out to Charlotte's mother, Paige Figi, in 
Colorado. He also contacted a network of parents in California and 
elsewhere who had turned to high-CBD marijuana for treating childhood epilepsy.

"The connection wasn't about cannabis," Forrest said. "The connection 
was that my kid was dying in front of us and these parents had found 
something that helped. We would have tried tree bark. We would have 
tried anything."

'Hope and magic'

Silas' neurologists in Sacramento, like most physicians, didn't write 
recommendations for medical marijuana. When Forrest first brought up 
marijuana with them, they told him that some families had success 
with such treatments and left it for him to explore.

So Forrest wound up taking his child to a Grass Valley pot doctor he 
found on his own in 2014. He felt ill at ease in the waiting room. 
Other patients included pot cultivators "sitting there laughing about 
their grows," he said, while they waited for a physician's 
recommendation for medical conditions that could allow them to 
cultivate marijuana under state law.

The doctor reviewed Silas' medical records before writing a 
recommendation that, under California's medical marijuana law, would 
enable Forrest to legally obtain cannabis as Silas' caregiver.

Not long after, a Modesto father named Jason David directed Forrest 
to his first marijuana connection.

David's 6-year-old son, Jayden, stricken with catastrophic seizures, 
had been spotlighted in a Discovery Channel miniseries called "Weed 
Wars." It focused on Harborside Health Center, a cavernous Oakland 
store that bills itself as the world's largest marijuana dispensary.

The dispensary stocked a CBD-rich tincture called "Jayden's Juice" 
that Harborside cultivators produced for David's son. Forrest began 
making regular seven-hour round trips to Oakland, spending about $300 
for a 12-day supply of the tincture. He squeezed droplets into a 
spoon for Silas, mixing them with yogurt or sweetened omega-3 oil.

"It never gave Silas a day without a seizure," Forrest said.

But he did notice something different in his son weeks after he 
started taking the formula. Silas seemed to regain some verbal 
skills, going from one-word grunts  such as "hungry!"  to speaking in 
short sentences, such as "Hey, Dad, I'm hungry."

Forrest sought out other CBD-rich oils in dispensaries in and around 
Sacramento. The products were hard to find in stores packed with 
potent marijuana strains and edibles more appealing to customers 
wanting high levels of THC.

The CBD tinctures that Forrest did find  he called them "hope and 
magic formulas"  also did nothing for Silas' seizures.

Most of the dispensary products were crafted based on what seemed to 
work with Jayden and the Colorado kids: nonpsychoactive plant 
formulas with ratios of at least 24-to-1 of CBD to THC. But those 
children had Dravet syndrome, a different form of epilepsy from Silas'.

Forrest consulted with more parents, including a California mother 
whose 13-year-old daughter suffered from Lennox-Gastaut. She told him 
he needed to find marijuana growers who could produce "whole plant 
extracts" or tincture oils processed from a mix of cannabis flowers 
and leaves with a greater balance of natural plant constituents, including THC.

He contacted a medical marijuana advocacy group called Americans For 
Safe Access, and in mid-2014 met with the Nevada County chapter 
president. Patricia Smith, 66, was a Hollywood costume designer for 
TV and movie productions including the 1985 ABC Civil War mini-series 
"North and South" and the 2003 comedy "Old School." She was also a 
former AIDS activist who in the '80s baked marijuana brownies to 
boost the appetites of gay men wasting away from the disease.

In 2008, after retiring outside of Grass Valley, Smith formed a 
medical marijuana collective called Grass Roots Solutions that grew 
plants and produced medicines to share with members suffering from 
Crohn's disease, traumatic stress, cancer and other conditions. Some 
of the members also made their living selling marijuana, providing 
pot products to dispensaries in Sacramento and beyond.

Smith put the word out in the cannabis community about a child with 
intractable seizures. She called the collective's vice president, 
Brad Peceimer, a former aerospace manufacturing engineer who had a 
degree in agricultural engineering.

"Hey, we've got this young child who looks like he can use your 
help," she said.

Peceimer, who grew marijuana and specialized in plant genetics, said 
he would start work on breeding something suitable for the child.

"I think we can help," he told Smith. "But it's going to take some time."
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