Marijuana aids kids with seizures, worries doctors

by Nicholas Riccardi
In this Feb. 7, 2014 photo, Matt Figi hugs and tickles his once severely-ill 7-year-old daughter Charlotte, as they wander around inside a greenhouse for a special strain of medical marijuana known as Charlotte's Web, which was named after the girl early in her treatment, in a remote spot in the mountains west of Colorado Springs, Colo. A few years ago, Charlotte's doctors were out of ideas to help her. Suffering from a rare disorder known as Dravet's syndrome, Charlotte had as many as 300 grand mal seizures a week, was confined to a wheelchair, went into repeated cardiac arrest and could barely speak. Now Charlotte is largely seizure-free, able to walk, talk and feed herself, with her parents attributing her dramatic improvement to this strain of medical cannabis. (AP Photo/Brennan Linsley)

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 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.

In this Feb. 7, 2014 photo, a special strain of medical marijuana known as Charlotte's Web grows inside a greenhouse, in a remote spot in the mountains west of Colorado Springs, Colo. Charlotte's Web is a strain of marijuana in which the psychoactive THC has largely been bred out, and the other cannabinoid compounds thought to be medically useful accentuated. Increasing anecdotal evidence that the pot strain is helping some children with epilepsy has led some families desperate to help their children to relocate to Colorado for treatment. (AP Photo/Brennan Linsley)

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 .

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.

In this Feb. 7, 2014 photo, workers cultivate small clones of a special strain of medical marijuana known as Charlotte's Web, in a remote spot in the mountains west of Colorado Springs, Colo. Charlotte's Web is a proprietary strain of marijuana in which the psychoactive THC has largely been bred out, and the other cannabinoid compounds thought to be medically useful accentuated. Increasing evidence that the pot strain is helping some children with epilepsy has led more than 100 families to relocate to Colorado for treatment since last summer, when success stories about Charlotte's Web began circulating via social media. (AP Photo/Brennan Linsley)

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 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."

In this Feb. 7, 2014 photo, Elizabeth Burger, 4, plays with a decorative plastic cup at home in Colorado Springs, Colo. Elizabeth suffers from severe epilepsy and is receiving experimental treatment with a special strain of medical marijuana, which she takes orally as drops of oil. After years of nearly losing their daughter while trying and failing with dozens of mainstream treatments, Elizabeth's parents moved from the east coast to Colorado, where they say they have had luck with Charlotte's Web, a proprietary strain of medical marijuana in which the psychoactive THC has been largely bred out, and the other cannabinoid compounds thought to be medically useful accentuated. (AP Photo/Brennan Linsley)

Now, Stanley and his brothers provide the marijuana to nearly 300 patients and have a waiting list 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."

In this Feb. 7, 2014 photo, Aileen Burger sits on her couch near her four-year-old daughter Elizabeth, left, who suffers from severe epilepsy and is receiving experimental treatment with a special strain of medical marijuana, which she takes orally as drops of oil, at home in Colorado Springs, Colo. After years of nearly losing their daughter while trying and failing with dozens of mainstream treatments, Burger and her husband moved from the east coast to Colorado, where they say they have had luck with Charlotte's Web, a proprietary strain of marijuana in which the psychoactive THC has been largely bred out, and the other cannabinoid compounds thought to be medically useful accentuated. (AP Photo/Brennan Linsley)

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.

In this Feb. 7, 2014 photo, Aileen Burger holds up a bottle of cannabis-infused oil used as medicine for her 4-year-old daughter Elizabeth, who suffers from severe epilepsy and is receiving the experimental treatment with a special strain of medical marijuana, at her home in Colorado Springs, Colo. After years of nearly losing their daughter while trying and failing with dozens of mainstream treatments, Elizabeth's parents moved from the east coast to Colorado, where they say they have had luck with Charlotte's Web, a proprietary strain of marijuana in which the psychoactive THC has been largely bred out, and the other cannabinoid compounds thought to be medically useful accentuated. (AP Photo/Brennan Linsley)

"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, California, brought Charlotte's Web to his state, where medical 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 waiting list of 400. It includes, he said, families willing to move from Japan and the Philippines.

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Sinister1812
not rated yet Feb 18, 2014
Of course doctors are worried. Because it's competition for "mainstream". And even if it does work, they'll deny proof until they've done 50 years worth of useless trials.
Returners
not rated yet Feb 18, 2014
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.


There has to be codified regulation. If a person faking a prescription to get their own medicine is a crime (forgery) I think it should be a crime for a person to prescribe any substance as a medical cure without an actual doctor writing the prescription.

I don't want medical marijuana to become an excuse to turn the whole country into a bunch of pot heads.

I think there are reasonable exceptions though. In cases like Charlotte's, what does a person have to lose when all the conventional treatments fail?

You and I would try damn near anything too if it was our child.
Returners
1 / 5 (1) Feb 18, 2014
Of course doctors are worried. Because it's competition for "mainstream". And even if it does work, they'll deny proof until they've done 50 years worth of useless trials.


I don't think trials are extensive enough, neither in the scope of time nor in the scope of side-effects investigated.

What is it, this anti-depressant recently, which causes boys to grow female breasts...not caught in trials. Wow. Can you imagine the emotional and physical trauma that puts these kids through, as if they weren't already depressed? The costs of corrective surgery, the questions and confusion this could cause for them for the rest of their lives?

It's an honest mistake, but it is something which SHOULD have been caught in trials. might help flat-chested girls though, but I'm not making a joke out of it, just saying not all is lost.

Marijuana doesn't make EVERYONE mellow, as several percent of users report it causing violent behavior. That's an observable side-effect not yet understood...
Returners
not rated yet Feb 18, 2014
Now if there are known, observable side-effects which are not yet understood, what non-observable side-effects might there be?

These things need to be understood much better before a potentially addictive substance like Marijuana begins to be some sort of over-the-counter cure all for pain and disease.

There's a reason drugs like Morphine (and Cocaine) are used only in a limited role, when absolutely necessary, because in the case of Cocaine, the side-effects can be immediately life threatening to the patient, and life threatening to by-standers and staff due to hallucinations and delusions.

I don't want several MORE percent of the population running around smoking this stuff, and driving while high and such, or operating machinery or making risky decisions like sexual relationships, when probably less than 1 in a thousand has a legitimate need for it.

According to epilepsy foundation.org, 10% of americans experience a seizure, but only about 1% have epilepsy.
Sinister1812
not rated yet Feb 18, 2014
I don't think trials are extensive enough, neither in the scope of time nor in the scope of side-effects investigated.

What is it, this anti-depressant recently, which causes boys to grow female breasts...not caught in trials. Wow. Can you imagine the emotional and physical trauma that puts these kids through, as if they weren't already depressed? The costs of corrective surgery, the questions and confusion this could cause for them for the rest of their lives?


Surely, something like that could've been picked up in trials easily. And if they were any longer, and stricter, it would be ridiculous. Nothing would be approved today. As it is, they go forever, and are so picky about what gets through.
dtxx
5 / 5 (1) Feb 23, 2014
Aspirin is available in buy as much as you can afford take as much as you want format as a cure for pain and disease. It kills over 3,400 people per year. According to the FDA "excess mortality from NSAID-related gastrointestinal bleeding at therapeutic doses."

http://www.fda.go...18761785

And if I want to be a pothead it's none of your damn business anyways. Would you rather live next door to chronic potheads or hardcore drunks? You think legalization will change anything anyways? We already have millions of "potheads" and no law will change that.

Maybe you should put posters of Nancy Reagan, Harry Anslinger, and Gil Kerlikowske up on your bedroom wall.

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