Pubdate: Fri, 14 Sep 2012
Source: Los Angeles Times (CA)
Copyright: 2012 Los Angeles Times
Author: Lee Romney


A Crackdown on Pot Dispensaries Threatens to Derail a Man's Quest to 
Control His Son's Seizures

Topamax. Depakote. Phenobarbital. The list goes on. Before Jayden 
David turned 5, he had tried a dozen powerful medications to tame a 
rare form of epilepsy. The side effects were devastating.

There were grand mal seizures that lasted more than an hour. Hundreds 
of times a day, muscle twitches contorted his impish face.

"If he wasn't sleeping, he was seizing," said Jayden's father, Jason David.

Feeling helpless, David said, he contemplated suicide. He prayed. 
Then one day he heard about a teenager who was expelled from school 
for using marijuana to help control seizures.

So began the pair's journey into California's medical cannabis culture.

In the14 months since, the little boy has been swallowing droppers 
full of a solution made mostly of cannabidiol, or CBD, the 
second-most prominent of marijuana's100 or so cannabinoids. Unlike 
the dominant THC, cannabidiol is not psychoactive, so the 
sweet-tasting infusion Jayden takes four times a day doesn't make him high.

Down from 22 prescription pills per day to four, he now eats solid 
food, responds to his father's incessant requests for kisses and 
dances in his Modesto living room to the "YoGabbaGabba!" theme song. 
The frequency and intensity of his seizures have been greatly reduced.

But this summer, federal prosecutors moved to close Oakland's 
Harborside Health Center-the nation's largest dispensary and the 
place David has relied on most for help.

The public debate over medical marijuana-which violates federal 
lawbut is Ilegal in California, 17 other states and the District of 
Columbia-for the most part has pitted those who praise its health 
benefits against those who say it is merely an excuse to get high. 
Lost in the discussion has been the fact that marijuana has myriad 
components that affect the body in a number of ways.

CBD, for instance, was virtually bred out ofU.S. plants decades ago 
by growers whose customers preferred the mind-altering properties of 
high-THC varietals. Yet it is experiencing a resurgence, having shown 
promise as an antiinflammatory, anticonvulsant, neuro-protectant and 
cancer fighting agent.

"Nobody is going to a dispensary for this to get high," said Martin 
Lee, a Bay Area writer who has reported on cannabidiol for years. 
"With CBD, it's clear that it's just about medicine." n the kitchen, 
a photo shows a beaming David nuzzled up against his newborn son. But 
the family's joy soon clouded. Jayden had his first grand mal at 41 
months. The muscle jerks followed, as did seizures that cause sudden collapse.

At11 2, the blue-eyed boy was diagnosed with Dravet syndrome, a form 
of infant epilepsy described in medical literature as catastrophic- 
and potentially fatal.

David and Jayden's mother, whose marriage failed under the stress, 
consulted top experts, resulting in "more drugs and more ambulance 
trips," David said.

By late 2010, Jayden had tried 11 medications. The 12th was 
stiri-pentol, hailed as a potential Dravet breakthrough. But after 
six months, Jayden's seizures and side effects were worse. David said 
his son rarely responded to those around him, had difficulty chewing 
and often screamed in fear.

"I was going crazy," David said. The onetime jewelry store manager 
recalled stepping out onto his front lawn in April 2011 to make a 
phone call: "Mom," he said. "I'm going to shoot myself in the head. I 
can't stand seeing him this way."

That Sunday, David, a devout Assyrian Christian, and his girlfriend 
brought Jayden to their parish. "We were asking God for signs," David said.

The TV news story David saw the next day about the epileptic teenager 
seemed to offer one. Scouring the Internet, he came across decades of 
research documenting the therapeutic effects of CBD.

It has been shown to relieve, among other things, spasms from 
multiple sclerosis, anxiety and symptoms of schizophrenia. Animal 
studies related to the treatment of rheumatoid arthritis, Alzheimer's 
and cancer have proved encouraging.

In an application for a patent awarded in 2003, theU.S. Department of 
Health and Human Services deemed non-psychoactive cannabinoids 
"particularly advantageous to use" as antioxidants and 
neuroprotectants because they can be administered in high doses 
without risk of toxicity.

As for epilepsy, tales of cannabis use date to ancient Chinese and 
Ayurvedic traditions.

Studies have shown THC is "overwhelmingly anticonvulsant" in animals, 
said Dr. Ben Whalley, a researcher at Britain's University of 
Reading, but CBD and some other non-psychoactive cannabinoids have 
shown similar effects without the mind-altering downside.

In a human trial during the 1970s, researchers found that four of the 
eight subjects who received large doses of CBD remained almost free 
of epileptic seizures, while three others improved. More recently, 
Whalley and his colleagues published results of an animal study that 
strongly supported CBD "as a therapeutic candidate for a diverse 
range of human epilepsies."

The long-term effect on children is unknown, but studies show CBD is 
well tolerated by adults and animals, Whalley said. As for side 
effects, he said, "Iwould be very surprised to find it to be any 
worse than either Depakote or clobazam" - the anticonvulsants Jayden 
still takes.

When David consulted his doctor about the possibility of treating 
Jayden with medical marijuana, he was told: "If I were you, I would 
try anything."

Soon after Steve DeAngelo co-founded Harborside Health Center in 
2004, he went in search of a lab to test his marijuana's potency, as 
well as screen it for pesticides, mold and other impurities. None 
would. So he invested in what would become Steep Hill Cannabis 
Analysis Laboratory.

Although obtaining CBD wasn't the original mission, it became a Holy Grail.

The British company GW Pharmaceuticals was marketing a drug for 
multiple sclerosis patients outside the U.S. that contained equal 
parts of THC and CBD, andwas exploring further uses for the compound. 
Clearly, in addition to the medical benefits, there was money to be 
made in CBD- for the growers, the dispensaries that sell sought-after 
strains and the independent testing labs.

Lee, who has tracked the research, said efforts to breed it back to 
prominence have produced about two dozen CBD-rich strains in California.

But those sold over Harborside's retail counters still contained too 
much THC for Jayden. Andrew De Angelo, Steve's brother and a patient 
liaison, helped direct David to a non-psychoactive, CBD infused 
solution that the dispensary had in stock.

Jayden got his first dose June 4, 2011. Days turned into months that 
were largely seizure-free, David said. But the second batch didn't 
work. Testing showed the CBD content was too low.

David took to the Internet again and found Al Coles, a former 
investment advisor turned cannabis consultant who works out of his 
Stinson Beach home. Coles had initially experimented with remedies 
for his own depression, then took up the cause for others.

Since meeting Jayden, he has spent thousands of dollars of his own 
money formulating and testing various concoctions. His method 
involves using ethanol to extract the CBD from high-content leaves or 
flowers, then evaporating it and reinfusing the substance with 
glycerin and creamed honey. The optimal ratio of THC to CBD for 
Jayden, his father said, appears to be about 1 to 19.

For legal reasons, Coles can't provide the mixture directly to 
Jayden, so he takes it to Steep Hill to ensure the CBD content is 
high enough before handing it over to Harborside to be dispensed.

Coles and Harborside-which oversees customized treatments for about 
three dozen severely ill patients- are not charging for their 
services, citing the severity of Jayden's condition and his father's 
precarious finances. But locating the scarce raw material has fallen 
largely to David, who has visited as many as 50 dispensaries around 
the state. Most, he learned, don't even know what high-CBD strains are.

Hehas paid $310 to $450 for an ounce of marijuana, which can make up 
to a month's worth of solution. David, who focuses on his son and is 
no longer working, depends on donations from friends and his parish 
in nearby Ceres.

Since launching a crackdown last fall, federal prosecutors have 
closed hundreds of California dispensaries. Calling Harborside a 
"superstore" for its 108,000 members, they targeted the building's 
landlords with civil forfeiture actions- amove the dispensary is fighting.

But medical marijuana advocates hold out hope for a favorable ruling 
from the U.S. Court of Appeals for the D.C. Circuit, which will hear 
oral arguments next month in a lawsuit challenging the classification 
of marijuana as a Schedule I substance- a dangerous drug with no 
medicinal value.

Although David and his son have become celebrities of sorts in the 
cannabis movement and among families of Dravet sufferers, who follow 
their journey on Facebook, some in the medical establishment balk at 
their choices.

"The drugs that come to market have been well screened for safety," 
said Dr. Donald Olson, who directs the pediatric epilepsy program at 
Lucile Packard Children's Hospital at Stanford University. "With 
alternative medicines like this, you are on very shaky ground. If the 
patient gets better, God bless them. I'm happy for them. But it's not 
something I can ethically recommend."

As for Jayden, he is now 6 years old and, in many ways, flourishing.

Speech therapy sessions provided by the school district have tripled 
in length because of his progress, and he is being main streamed this 
fall for an hour a day. While on his heavy prescription cocktail, 
Jayden stumbled frequently and was unable to enter the church 
sanctuary; now he takes Communion and sits for long periods cradled 
under his father's arm. He hugs everyone who asks.

"The difference is from Earth to heaven," said Serkes Rasho, a St. 
George parish security guard whom a boisterous Jayden greeted with an 
embrace. "Before, he couldn't walk. He didn't have eye contact. Now 
he smiles. He recognizes everyone."
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MAP posted-by: Jay Bergstrom