‘My kid was dying in front of us … We would have tried tree bark. We would have tried anything’

Scott Brown

‘My kid was dying in front of us … We would have tried tree bark. We would have tried anything’

 

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.

Silas Hurd rests with his mother, Nicole, while sister Abbigail takes her turn at a video game. After traditional medicine failed to relieve Silas’ violent seizures, the family turned to the medical marijuana community for help.

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.

Silas Hurd and his sister, Abbigail, play in the living room of the family’s Penn Valley home. She worries about her brother, whose medical needs consume much of the family’s energy. “I’m a little lonely sometimes,” Abbigail said.

Forrest Hurd quit his job as a mental-health program specialist to care for his son, Silas. His son’s epilepsy, Forrest said, left him “developmentally frozen in time.”

“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.

A medical marijuana cooperative in Nevada County has experimented with specially crafted cannabis tinctures in a effort to deliver relief for Silas Hurd.

“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.

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 Hurd, Silas’ dad

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.

Silas Hurd appears in a family photograph taken by his father, Forrest, in 2008.

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.

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.

Nicole Hurd, Silas’ mother

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.”

After months of trial and error, Forrest Hurd found hope in a specially formulated cannabis tincture that has helped calm Silas’ seizures. “We would have tried anything,” Forrest said.

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’.

The connection wasn’t about cannabis. 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.

Forrest Hurd

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.

Patricia Smith founded Grass Roots Solutions, a medical marijuana collective in Nevada County. Her group has taken up the Hurd family cause in an ongoing medical experiment.

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.”

Peter Hecht: 916-326-5539@phecht_sacbee

What is Lennox-Gastaut syndrome?

Lennox-Gastaut syndrome, or LGS, is a severe form of epilepsy. Seizures usually begin around 4 years old. The condition accounts for 2-5 percent of childhood epilepsies. LGS can be caused by brain malfunctions, severe head injury, infection of the central nervous system and inherited degenerative conditions. There is no cure.

Uncontrolled neuron firing

Epilepsies are neurological disorders in which the brain’s nerve cells, or neurons, sometimes signal abnormally and cause seizures. During a seizure, many neurons fire at the same time, much faster than the normal rate. This surge in electrical activity can result in involuntary body movement as well as other responses.

Types of seizures

The types of seizures vary widely among LGS patients. Most experience multiple seizure types, multiple times a day.

Tonic: brief stiffening, sudden muscle contraction

Atonic: sudden loss of muscle strength, can cause falls or drops, lasts less than 15 seconds

Complex partial: multidimensional attacks can cause disorientation, lip smacking, arm flailing

Tonic-clonic or grand mal: muscles stiffen, eyes roll upward and dilate, altered respiratory function, extremities jerk rapidly, lasts 1-3 minutes

Myoclonic: rapid jerking or twitching of muscles

Treatment

Children with Lennox-Gastaut suffer cognitive impairment, including low attention, hyperactivity, slow mental processing and social difficulties. No single treatment is believed to address LGS, and drugs used to lessen convulsions can worsen intellectual and behavioral abilities.

Prognosis

Up to 90 percent of children with LGS have developmental challenges, including in some cases autism and intellectual disability. Eighty percent will continue to have seizures as adults, and most will require supervised care.

A family photo shows Silas Hurd at the Pediatric Epilepsy Center at UC San Francisco with wires taped to his face and head for an electroencephalogram, or EEG. An EEG is a painless test that detects and records electrical activity in different regions of the brain.

Silas Hurd gazes at the view outside his family’s Penn Valley home. A devastating childhood seizure disorder has stunted his development and put him at risk of early death.