User Login    
 + Register
TV Banner
News : Colorado Pot Aids Kids With Seizures, Worries Doctors
Posted by Randy on 2014/2/18 4:27:57 (231 reads) News by the same author

COLORADO SPRINGS, Colo. (AP) -- The doctors were out of ideas to help 5-year-old Charlotte Figi.
Click to see original Image in a new window

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 whoever 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 non-authorized 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 and the five brothers who grow the drug and sell it at cost through a nonprofit. 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 flat-lined 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 high-CBD, 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 only relocated to Colorado after neurologists told them Elizabeth's best hope - brain surgery - could only stop some of her seizures.

"It's a very big strain being away from the rest of our family," Aileen Burger said recently while waiting for her husband to return from a trip to sell their Long Island house. "But she doesn't have to have pieces of her brain removed."

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.

Printer Friendly Page Send this Story to a Friend Create a PDF from the article


Other articles
2014/9/19 6:40:24 - Police Radar Gun That Shows If You Are Texting?
2014/9/19 4:28:05 - Scotland Rejects Independence From U.K.
2014/9/19 4:24:51 - Prison Supervisor Guilty Of Hiding Guard Attack
2014/9/19 4:20:53 - Missouri Creates Office To Address Racial Issues
2014/9/19 4:17:24 - Governor Nixon Announces Plan For Lottery Education Funding
2014/9/19 4:12:20 - Police: Principal's Sexual Acts With Teen Captured On Cell Phone Video
2014/9/19 4:07:03 - Body Found Floating In Lake Of The Ozarks
2014/9/19 4:00:20 - Convicted Florida Felon Kills His 6 Grandchildren
2014/9/18 15:04:46 - Milan Coaches Shows For Thursday, 9/18/14
2014/9/18 11:28:04 - Mizzou, UCONN Agree To Home-And-Home Football Series
2014/9/18 10:54:16 - Teen Crashes SUV After Friend Sets Fire To Underarm Hair
2014/9/18 10:45:40 - Cat Euthanized, Shot By Neighbor With 9 Blow Darts
2014/9/18 9:30:00 - Strong Benton Tennis Team Shuts Down Trenton
2014/9/18 9:28:38 - Tickets For Potential Royals Playoff Games Now On Sale
2014/9/18 9:00:00 - Wright Memorial Hospital To Offer Reduced Cost Health Screenings
2014/9/18 8:47:28 - Court Of Appeals To Hold Session At Milan
2014/9/18 8:41:03 - Poker Run Set To Assist Trenton Toddler
2014/9/18 8:40:00 - Two Trenton Residents Charged In Leaving The Scene Of An Accident Case
2014/9/18 8:35:38 - Entries Continue For Missouri Days Parade
2014/9/18 4:47:49 - Dog That Went Missing In New York Found 2 Years Later In Florida
2014/9/18 4:35:57 - Suspect In Custody After Apparent Shovel Assault
2014/9/18 4:29:18 - Kids May Face Citizenship Test Under New Proposal
2014/9/18 4:24:15 - Sierra Club Endorses Grain Belt Transmission Line
2014/9/18 4:20:00 - Facebook Bans Mother For Posting Photos Of Baby With Birth Defect
2014/9/18 4:19:44 - Meth Blamed After Missouri Man Sets Himself On Fire
2014/9/18 4:15:41 - Bus Driver Resigns After Sick Child Left On Side Of Road
2014/9/18 4:08:23 - Teen, 14 Hit By Car On Way To School
2014/9/18 4:03:31 - Drag Queens Dress Down Facebook Over Names
2014/9/18 3:57:01 - KC Man Charged With Throwing Molotov Cocktails At Congressional Office
2014/9/17 7:30:00 - Princeton School Board Meeting Report



Bookmark this article at these sites

                   

Listen to KTTN-FM