Pubdate: Wed, 19 Feb 2014
Source: Seattle Times (WA)
Copyright: 2014 The Associated Press
Contact:  http://seattletimes.nwsource.com/
Details: http://www.mapinc.org/media/409
Author: Nicholas Riccardi, The Associated Press

KIDS WITH SEIZURES USING POT AS TREATMENT

Over 100 Families Have Relocated to Colorado Since a Little Girl's 
Severe Ailments Improved With Use of a Marijuana Strain.

COLORADO SPRINGS, Colo. (AP) - The doctors were out of ideas to help 
5-year-old Charlotte Figi.

Suffering from a rare genetic disorder, she had as many as 300 grand 
mal seizures a week, used a wheelchair, went into repeated cardiac 
arrest and could barely speak. As a last resort, her mother began 
calling medical-marijuana shops.

Two years later, Charlotte is largely seizure-free and able to walk, 
talk and feed herself after taking oil infused with a special pot 
strain. Her recovery has inspired both a name for the strain of 
marijuana she takes that is bred not to make users high - Charlotte's 
Web - and an influx of families with seizure-stricken children to 
Colorado from states that ban the drug.

"She can walk, talk; she ate chili in the car," her mother, Paige 
Figi, said as her dark-haired daughter strolled through a cavernous 
greenhouse full of marijuana plants that will later be broken down 
into their anti-seizure components and mixed with olive oil so 
patients can consume them. "So I'll fight for whomever wants this."

Doctors warn there is no proof that Charlotte's Web is effective, or even safe.

In the frenzy to find the drug, there have been reports of 
nonauthorized suppliers offering bogus strains of Charlotte's Web. In 
one case, a doctor said, parents were told they could replicate the 
strain by cooking marijuana in butter. Their child went into heavy seizures.

"We don't have any peer-reviewed, published literature to support 
it," Dr. Larry Wolk, the state health department's chief medical 
officer, said of Charlotte's Web.

Still, more than 100 families have relocated since Charlotte's story 
first began spreading last summer, according to Figi and her husband. 
The relocated families have formed a close-knit group in Colorado 
Springs, the law-and-order town where the dispensary selling the drug 
is located. They meet for lunch, support sessions and hikes.

"It's the most hope lots of us have ever had," said Holli Brown, 
whose 9-year-old daughter, Sydni, began speaking in sentences and 
laughing since moving to Colorado from Kansas City and taking the 
marijuana strain.

Amy Brooks-Kayal, vice president of the American Epilepsy Society, 
warned that a few miraculous stories may not mean anything - 
epileptic seizures come and go for no apparent reason - and 
scientists do not know what sort of damage Charlotte's Web could be 
doing to young brains.

"Until we have that information, as physicians, we can't follow our 
first creed, which is do no harm," she said, suggesting that parents 
relocate so their children can get treated at one of the nation's 28 
top-tier pediatric epilepsy centers rather than move to Colorado.

However, the society urges more study of pot's possibilities. The 
families using Charlotte's Web, as well as the brothers who grow it, 
say they want the drug rigorously tested, and their efforts to ensure 
its purity have won them praise from skeptics like Wolk.

For many, Charlotte's story was something they couldn't ignore.

Charlotte is a twin, but her sister, Chase, doesn't have Dravet's 
syndrome, which kills kids before they reach adulthood.

In early 2012, it seemed Charlotte would be added to that grim 
roster. Her vital signs flatlined three times, leading her parents to 
begin preparing for her death. They even signed an order for doctors 
not to take heroic measures to save her life again should she go into 
cardiac arrest.

Her father, Matt, a former Green Beret who took a job as a contractor 
working in Afghanistan, started looking online for ways to help his 
daughter and thought they should give pot a try. But there was a 
danger: Marijuana's psychoactive ingredient, THC, can trigger seizures.

The drug also contains another chemical known as CBD that may have 
seizure-fighting properties. In October, the Food and Drug 
Administration approved testing a British pharmaceutical firm's 
marijuana-derived drug that is CBD-based and has all its THC removed.

Few dispensaries stock CBD-heavy weed that doesn't get you high. Then 
Paige Figi found Joel Stanley.

One of 11 siblings raised by a single mother and their grandmother in 
Oklahoma, Stanley and four of his brothers had found themselves in 
the medical-marijuana business after moving to Colorado. Almost as an 
experiment, they bred a low-THC, high-CBD plant after hearing it 
could fight tumors.

Stanley went to the Figis' house with reservations about giving pot to a child.

"But she had done her homework," Stanley said of Paige Figi. "She 
wasn't a pot activist or a hippy, just a conservative mom."

Now, Stanley and his brothers provide the marijuana to nearly 300 
patients and have a waitlist of 2,000.

The CBD is extracted by a chemist who once worked for drug giant 
Pfizer, mixed with olive oil so it can be ingested through the mouth 
or the feeding tube that many sufferers from childhood epilepsy use, 
then sent to a third-party lab to test its purity.

Charlotte takes the medication twice a day. "A year ago, she could 
only say one word," her father said. "Now she says complete sentences."

The recovery of Charlotte and other kids has inspired the Figis and 
others to travel the country, pushing for medical-marijuana laws or 
statutes that would allow highCBD, low-THC pot strains.

Donald Burger recently urged a New York state legislative panel to 
legalize medical marijuana while his wife, Aileen, was in the 
family's new rental house in Colorado Springs, giving Charlotte's Web 
to their daughter Elizabeth, 4. The family relocated to Colorado only 
after neurologists told them Elizabeth's best hope - brain surgery - 
could only stop some of her seizures.

Ray Mirazabegian, an optician in Glendale, Calif., brought 
Charlotte's Web to his state, where medical marijuana is legal. He 
convinced the Stanley brothers to give him some seeds he could use to 
treat his 9-year-old daughter Emily, who spent her days slumped on 
the couch. Now, she's running, jumping and talking. Mirazabegian is 
cloning the Charlotte's Web seeds and has opened the California 
branch of the Stanleys' foundation.

Mirazabegian has begun to distribute the strain to 25 families and 
has a waitlist of 400. It includes, he said, families willing to move 
from Japan and the Philippines.
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MAP posted-by: Jay Bergstrom