Medical Marijuana: The Last Hope for Sick Children

Desperate for help, families take extraordinary steps to help children wracked with seizures.

From the WebMD Archives

Ezra Kiser and mother Marisa KiserEzra suffered his first seizure at 3 days old.

He screamed, gyrated, turned purple. The strain on his body and mind left him unresponsive for hours. At 3 months, the seizures began to multiply, 300 to 500 a day.

Doctors pumped him full of medicines, which along with the near-constant seizures left him in a catatonic state, sleeping 21 hours a day.  He went 4 months without crying.

"It was like having a little rag doll," recalls his mother, Marisa Kiser.

But as he nears his second birthday, Ezra is down to fewer than 10 seizures a day. He is putting on weight. He holds his head up. He cries when he is hungry. He shows preferences for objects and colors. His dozen medications are down to one, and he is being weaned off that.

"He's like a totally different child," says his mother. "He's finally getting an infancy that he never had."

She credits a most unlikely drug: marijuana.

Kiser is among the hundreds of parents who have moved to Colorado in recent months or are planning to move to get access to a special strain of the plant. It is low in THC, the ingredient that gives users a "high," but high in cannabinoids, or CBD.  That's the ingredient that has shown amazing results in reducing seizures with minimal side effects.

They are marijuana refugees, families who have moved hundreds or thousands of miles away from loved ones for a drug that remains illegal for recreational use in 48 states and on the federal level. Their stories have sparked efforts in many states to relax marijuana laws and spurred research into how the drug reduces seizures.

This former teacher from a Southern Baptist family in South Carolina is as surprised as anyone to be here.

"You spend all your time saying, 'Don't do drugs.' Now here I am and some of my students are contacting me and saying, 'You live in Colorado and you give your kid pot?'" Kiser says. "I would never have thought in a million years I'd be in Colorado giving my kid cannabis."

"But it's working, so I'm not complaining one bit."

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Meet Charlotte

On a January afternoon at a marijuana farm in a secret location in the Rocky Mountain foothills, Charlotte slumps over her mother's shoulder. Sleepy, yes, but not obviously sick.

It wasn't always this way.

Charlotte suffers from Dravet syndrome, a rare and incurable form of epilepsy that often begins in infancy and can lead to developmental disability and death. By 5, she was wheelchair-bound, fed with a tube, and catatonic from heavy drugs and up to 50 grand mal seizures a day.

Her mother, Paige Figi, was desperate, spending countless hours searching the Internet for some miracle. Two years ago, she thought she may have found it in the report of a father in California who had some success reducing Dravet seizures with marijuana that is high in CBD. She read how pot growers had increased the THC in plants in recent decades. So why couldn't it be bred to be low in THC but high in CBD?

"When you are at the end of the line, when you have intractable epilepsy in a child that's not doing very well, you look into every little teeny tiny thing," says Figi.

Fortunately for her, she lives in Colorado, which has one of the largest medical marijuana industries in the country. And through a friend, she met Joel Stanley.

One of five brothers in the medical marijuana business, Stanley had been experimenting with plants high in CBDs.

"We were breeding for CBD, not specifically for intractable epilepsy, but for auto-immune disorders, its potential cancer-fighting effects," Stanley says. "There are a lot of people who would like to partake in the medicinal benefits of this plant and some of us don't like to get high, like me."

Figi convinced him to grow more of this marijuana with a CBD to THC ratio of 30:1. Then she convinced the state to give a medical marijuana license to a 5-year-old, the youngest ever on the state registry.

After her first dose of oil made from marijuana, Charlotte went seizure-free for a week. Figi was in disbelief.

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"I went back to my notes. 'What else did I change that day?' I thought. 'There's no way this benign substance is treating her seizures after we tried every pharmaceutical available,'" she says.

Two more months passed. Charlotte starting walking and talking, feeding herself. She began learning things and making friends.

Two years later, she is down to 1 or 2 seizures a month, Figi says.

As for the strain of marijuana that would someday give hope to hundreds of families, Stanley named it "Charlotte's Web."

Meet Sydni

child helmet

In a Colorado Springs coffee shop on a January afternoon, it's alphabet time. "What word starts with 'I?'" her tutor asks.

"Ice cream!" Sydni screeches. If not for the helmet she wears and her speech, limited for a 9-year-old, you wouldn't even know she is sick.

A normal child until age 4, she began having seizures, which grew in intensity and frequency until she was left "in a drooling fog," says her mother, Holli Brown.

Sydni has an intractable form of epilepsy, meaning medications don't control seizures. There is no known cause and no known cure. By last summer, Brown had tried everything but brain surgery. Then she came across a YouTube video about Charlotte and Zaki, an infant whose seizures have vanished from taking Charlotte's Web.

Two weeks later, Brown left Kansas City and signed a lease in Colorado Springs. After 3 months on Charlotte's Web, Sydni is a different child. Her previous record without a seizure was 4 days. She now beats that regularly.

"We've seen some things from Sydni that we hadn't seen since before the seizures started: her word use, her cognitive abilities, her clarity, her playfulness, her emotions," Brown says. "She gets excited about stuff. She gets lovey, cuddly. She used a 10-word sentence yesterday. Normally I'm happy if I get 2 or 3 words out of her."

"She's just starting to shine through."

The YouTube video was only the beginning. Families like Figi's began telling their stories in the media, including a CNN report featuring Charlotte, in which longtime medical marijuana opponent Dr. Sanjay Gupta publicly changed his mind.

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Interest in Charlotte's Web has been so strong that Figi and Heather Jackson, Zaki's mother, started the Realm of Caring, a nonprofit organization to ease access to the drug for parents and help them get established in Colorado.

Stanley, the Colorado grower, is providing Charlotte's Web to 100 children, with another 300 on a waiting list, from all over the U.S. and other countries.

"It works, and now we have all these people moving here, refugees," Figi says. Parents say there are few side effects, except for some initial sleepiness in their children. Some also have a better appetite.

Says Stanley, "It's obvious there's something to this. The next step is beginning to understand that, so that potentially we can maybe make even better medications from it and with it. There's something happening that the scientific and medical community needs to dig into and understand."

Doctors See the Need

When Margaret Gedde, MD, PhD, first met Charlotte, she was hesitant about prescribing marijuana for such a young child.

One of a handful of doctors in Colorado who work exclusively in medical marijuana referrals, she had never prescribed medical marijuana for such a young child. But she understood the family's desperation. And seizures are one of the conditions for which medical marijuana can be prescribed.

"There is enough of a track record with CBD and other cannabis products regarding safety. I really felt very comfortable in the realm of working with substances that have been used for thousands of years and do have a large number of animal and laboratory studies done," Gedde says.

Charlotte's recovery has amazed Gedde as much as everyone else. Since CNN told Charlotte's story to the world, she has been seeing 30 children a month, two-thirds of them from out-of-state. She says seizures are reduced in 80% to 90% of kids.

"The CBD itself seems to be healing, and you can get off those other medications. You're stopping the seizures, so it's all very encouraging," she says.

What neither Gedde nor anyone else understands is why it controls seizures.

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Because pot remains illegal under federal law, even in a state like Colorado where it is legal, no federally funded hospital or university will conduct research with it.

The lack of study concerns Edward Maa, MD, an epilepsy specialist in Denver. He's also a board member of the Epilepsy Foundation of Colorado, which has publicly urged caution regarding CBD treatment.

"The influx of patients is unfortunately something that the system is not bearing very well and probably should be proceeded with caution if at all," he says. Maa is concerned about the effects on children of families uprooted or living apart and of parents stopping other medications too soon.

"The foundation is very supportive of researching the anecdotal reports that are so shocking and exciting," he says.

He wants to see multiple scientific studies, though, with control groups and placebos, before endorsing marijuana as a seizure treatment. But he acknowledges the difficulty in getting the FDA to support research.

Gedde and Maa co-authored a report in December to the American Epilepsy Society, describing some of the successes. But it was not the sort of rigorous scientific research that is required for FDA approval.

"It's sort of like a popular movement and not scientifically established, so I see where Dr. Maa is coming from," Gedde says.

The FDA recently approved research on a purified form of CBD for children with epilepsy. Orrin Devinksy and Daniel Friedman of NYU's Comprehensive Epilepsy Center, are involved in the research. The doctors wrote an opinion piece in the New York Times that urged the government to remove some of the restrictions around studying marijuana so doctors can better understand its risks and benefits.

"The truth is we lack evidence not only for the efficacy of marijuana, but also for its safety," they wrote. "This concern is especially relevant in children, for whom there is good evidence that marijuana can increase the risk of serious psychiatric disorder and long-term cognitive problems."

The call for rescheduling marijuana has been echoed by the Epilepsy Foundation, a national group, which said, "An end to seizures should not be determined by one's ZIP code." 

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Along with federal rescheduling, the organization called for changes to state laws to make epilepsy a condition eligible for medical marijuana and research on multiple types of cannabis and seizures. 

Even if research on marijuana and seizures were approved, it would be years before anything would be available on pharmacy shelves around the country. Gedde knows many families don't have that much time, because seizures can leave children impaired for life. To her, it's worth the risk of not having a proven scientific basis.

"When you look at the risks and benefits for each patient, when you look at a child like Charlotte, whose story does reflect so many other kids ... they can never be normal with this going on. You look at the medical issues of the medications they're on, the sedating, zombie-like effects," Gedde says.

"I do feel confident in my practice, where I can say, 'For you, these are the pros and cons and I feel this is worth doing because nothing else has worked and your child is being damaged daily.' You know the path they're going down so as a physician you do have a comfort level to say, 'Yes, for you, I think you should try this, and I will help you with it.'"

Making the Move to Colorado

Kiser holds up a small vial of oil, baby Ezra's medication.

"That can get me arrested for drug trafficking. Isn't that sad?" she says.

Moving to Colorado from South Carolina has been difficult for this single mother. She and her other son, Noah, miss friends and family back home, though she has found a lot of comfort in the close-knit network of parents in similar straits here.

She would love to move back, but she won't risk being arrested and having her children taken away. She and other parents say they don't necessarily want their home states to go as far as Colorado and legalize recreational pot. They dream of a "hall pass" concept, legislation to let families bring it out of Colorado for medical purposes.

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Although some states are pursuing such legislation, Kiser believes that conservative South Carolina would probably be one of the last states to do it.

"If we're stuck here, so be it," she says.

"I was really worried Ezra wouldn't live through infancy, whereas now I have a hope that he'll walk one day. He'll talk one day. I might actually get to hear him say 'mom,'" she says. "If he has to be on it the rest of his life, that's what we'll do. We'll do whatever it takes. His life is just so much better right now, all the way around."

"He's our miracle."

WebMD Feature Reviewed by Michael W. Smith, MD on February 21, 2014

Sources

SOURCES:

Marisa Kiser.

Paige Figi.

Joel Stanley, medical marijuana grower, Colorado.

Holli Brown.

Margaret Gedde, MD, PhD, owner, Gedde Whole Health LLC, Littleton, CO.

Edward Maa, MD, assistant professor of neurology, University of Colorado School of Medicine, Aurora.

Dravetfoundation.org.

Doosesyndrome.org.

Theroc.us.

Epilepsy Foundation of Colorado statement.

Medscape: "FDA Approves Cannabis Extract Study in Pediatric Epilepsy."

CNN: "Why I changed my mind on weed."

YouTube: "Charlotte's Web and Zaki's Journey."

New York Times: "We Need Proof on Marijuana."

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