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KIDS WITH SEIZURES USE POT AS TREATMENT

Wednesday, 19 February 2014 06:10 Published in Health & Fitness

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 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. 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.

---

Follow Nicholas Riccardi on Twitter at HTTPS://TWITTER.COM/NICKRICCARDI .

© 2014 THE ASSOCIATED PRESS. ALL RIGHTS RESERVED. THIS MATERIAL MAY NOT BE PUBLISHED, BROADCAST, REWRITTEN OR REDISTRIBUTED. Learn more about our PRIVACY POLICY and TERMS OF USE.

CINCINNATI (AP) -- The Cincinnati surgeon who wrote the book on saving choking victims through his namesake Heimlich maneuver has now penned a new book: his memoir.

Dr. Henry Heimlich's views on how the maneuver should be used and on other innovations he has created or proposed have put him at odds with some in the health field. But he hopes his recently published memoir will preserve the technique that has cleared obstructions from windpipes of choking victims around the world for four decades and made his name a household word.

"I know the maneuver saves lives, and I want it to be used and remembered," the 94-year-old retired chest surgeon told The Associated Press this month. "I felt I had to have it down in print so the public will have the correct information."

Much of his autobiography - "Heimlich's Maneuvers: My Seventy Years of Lifesaving Innovation" - focuses on the maneuver, which involves thrusts to the abdomen that apply upward pressure on the diaphragm to create an air flow forcing food or other objects out of the windpipe.

Heimlich says thousands of deaths reported annually from choking prompted him in 1972 to seek a solution. Over the next two years, leading a team of researchers at Jewish Hospital in Cincinnati, he successfully tested the technique by putting a tube with a balloon at one end down an anesthetized dog's airway until it choked. He then used the maneuver to force the dog to expel the obstruction.

"By 1974, I knew I needed to get the maneuver to the public as soon as possible to save lives," he said.

He appeared on radio and television shows including "Good Morning America" and "Tonight Show Starring Johnny Carson" and started hearing from people who had used the maneuver or been saved by it.

The maneuver made headlines again this month. Clint Eastwood was attending a golf event in Monterey, Calif., when the 83-year-old actor saw the tournament director choking on a piece of cheese and successfully performed the technique.

"The best thing about it is that it allows anyone to save a life," Heimlich said.

Anne Jutt of Mason, a Cincinnati suburb, said Heimlich will always be a hero to her family. She used the maneuver last spring when her 6-year-old son was choking on a cherry tomato.

"I was scared of hurting him, but he was starting to get limp," she said. "I put everything I had into it, and the tomato flew out like a bullet."

Heimlich says the maneuver is very effective when used correctly, but he does not approve of American Red Cross guidelines calling for back blows followed by abdominal thrusts in choking cases that don't involve infants or unconscious victims. Red Cross officials say evidence shows using multiple methods can be more effective, but Heimlich says blows can drive obstructions deeper into a windpipe. The American Heart Association backs abdominal thrusts.

Neither organization supports Heimlich's view that using the maneuver to remove water from the lungs could save drowning victims. They recommend CPR.

"There is no evidence that abdominal thrusts are effective for drowning victims," said Dr. Robert Neumar, chairman of the Emergency Cardiovascular Care Committee of the American Heart Association.

Heimlich points with pride to some of his other innovations, such as a chest drain valve credited by some with saving soldiers and civilians during the Vietnam War. But he has drawn sharp criticism for his theory that injecting patients with a curable form of malaria could trigger immunity in patients with the HIV virus that causes AIDS. Medical experts have said injecting patients with malaria would be dangerous and have criticized Heimlich for conducting studies involving malariotherapy on HIV patients in China.

Heimlich mostly brushes off criticism about his work.

"I'll be the first to admit that a number of my ideas are controversial and in some ways unorthodox," Heimlich said. "But I have enough guts to know that when I am right, it will come about as the thing to do, even if others do the wrong thing for a time."

Heimlich now lives in an assisted-living facility but responds to emails and letters about his work and makes guest appearances with the Heimlich Heroes program. The program designed to teach young people how to use the Heimlich maneuver allows him to still pursue his passion for saving lives.

"And I'm not done yet," he said with a grin.

© 2014 THE ASSOCIATED PRESS. ALL RIGHTS RESERVED. THIS MATERIAL MAY NOT BE PUBLISHED, BROADCAST, REWRITTEN OR REDISTRIBUTED. Learn more about our PRIVACY POLICY and TERMS OF USE.

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