Families Seek Medical Marijuana to Treat Kids in Need
Jan. 26--Mallory Johnson had lost count of how many times her daughter was rushed to the hospital in an ambulance or helicopter, her tiny body convulsed with seizures.
Desperate to find a treatment that would work for Zoey, Johnson's odyssey took her through a winding trail of doctors in Oklahoma, Texas and Arizona.
When Zoey was 3, Johnson learned her daughter had Dravet syndrome. The seizure disorder is so rare -- striking about 1 in 40,000 children -- that one doctor told her: "Google it."
Johnson tried a long list of medications and even put Zoey on an extreme diet to stop the seizures -- one lasted two hours -- without much success. On her worst days, Zoey was having hundreds of seizures.
"Every time we went to a doctor, I would never leave without being in tears," said Johnson, 27. "It was always, 'This is as good as it's going to get. She's never going to learn.' "
Johnson, living in Stillwater in 2011, joined a support group for parents whose children had Dravet and similar conditions. Through the group, she would later learn of a promising new treatment for children like Zoey: marijuana.
She heard about children with Dravet, epilepsy and other seizure disorders who improved dramatically within days, sometimes hours, of receiving an oil-based extract of marijuana in their food. But the drug remained illegal in Oklahoma and most other states.
In September, Johnson, who is divorced, moved with her daughter to Colorado, following a trail of families from across the nation seeking to help their children. At least one other Oklahoma family has moved to the state and others are preparing to do so, she said.
One Oklahoma City mother, whose 9-year-old daughter is on hospice care, is raising funds to move to the state, though it would divide her military family.
Colorado is one of 20 states (plus the District of Columbia) that have legalized medical marijuana with a doctor's recommendation.
Johnson moved to Evergreen, Colo., outside of Denver, and obtained the required signatures from two doctors to get Zoey a prescription for a special extract of marijuana known as Charlotte's Web.
The drug takes its name from a famed children's book but also a 6-year-old Colorado girl, Charlotte Figi. Charlotte's seizures dropped from 300 per week to three per month after treatment began, according to numerous news accounts.
Effects of Charlotte's Web
The plants used to make Charlotte's Web are low in THC, the psychoactive component of marijuana, so they don't produce the "high" associated with the drug. But the plants are high in another chemical component called cannabidiol, or CBD.
Experimental data has indicated cannabidiol can reduce or even eliminate seizures. Last month, the FDA approved a study for cannabidiol in children with Dravet and severe forms of epilepsy.
Within 15 minutes of receiving her first dose, Zoey said a new word, Johnson said. Age 6 at the time, Zoey had the developmental level of a 2-year-old.
Eight days later, Zoey had said 20 new words and wrote her name for the first time, Johnson said.
"Nothing has worked like (cannabidiol) does. It's actually the light at the end of the tunnel," she said.
Johnson, who grew up in Perry, is aware of the perception many people have of medical marijuana users: stoners using aches and pains to gain legal access to pot.
"I used to be one of those people who thought that," she said.
"The main thing is, it's just like any other prescription. It's not like I'm rolling a doobie for my 3-year-old. It was a last resort for us."
Johnson has had to explain to state lawmakers and others that she wasn't blowing smoke in her daughter's face.
The drops of medicine she gives her daughter three times a day come in a brown cough-syrup type bottle and are mixed with olive oil. Once on more than two dozen medications, Zoey is now able to be weaned off of them slowly.
The number of seizures has dropped dramatically, and Zoey now attends kindergarten, Johnson said.
Johnson plans to stay in Colorado until the drug becomes legal in Oklahoma.
"It's difficult to uproot your family and move. I've been raised here. But everybody out here has just been so supportive. ... They know what you are going through, and they know how to help."
Meanwhile, she and her family are among those hoping to educate policymakers about Charlotte's Web.
Johnson's father, Marty Piel, is expected to appear at a hearing along with other proponents before Oklahoma state lawmakers on Feb. 12. He said they hope for some kind of narrow exception in the state's drug laws for children like Zoey.
Piel said the issue of legalizing marijuana for recreational use "is for somebody else to fight."
"We don't want to break the law, but we do want to get these children help," he said.
Benefit 'without the high'
Mark Woodward, a spokesman for the Oklahoma Bureau of Narcotics and Dangerous Drugs, said the agency is currently opposed to legalizing medications such as Charlotte's Web. He said the agency believes for safety's sake, the drug should go through the same federal approval process as others.
One drug approved by the FDA, Marinol, contains high amounts of THC and is used to treat appetite loss associated with AIDS and chemotherapy. It is not approved for other uses and actually may cause seizures, according to the drug company's website.
Woodward said low-THC marijuana could actually be a solution to the controversy over medical marijuana.
"It could be looked at as the anti-medical marijuana solution. ... Many of the users of medical marijuana have testified that they're now trying the CBD tincture and actually getting more benefit without the high."
Woodward said Charlotte's Web is still illegal in Oklahoma because it has not been approved for use as a drug and the amount of THC could not be verified.
"We are cautiously watching it from the sidelines. Right now, I would say we are against it only because our concern is that we don't know enough about it."
Patients wait
While Johnson was on her quest to find out what was ailing her daughter, another Oklahoma native was beginning his to create Charlotte's Web.
Josh Stanley is one of six brothers born in Shawnee who moved with their family to Colorado, all but one graduating from Colorado Springs Christian School. Stanley -- 18 when his family moved to the state -- later opened the second medical marijuana dispensary in Colorado.
His brothers started their own marijuana growing operation in 2009, inspired by meeting cancer patients at the dispensary. Today, the brothers operate for-profit medical marijuana dispensaries in Colorado Springs and a large marijuana growing operation.
They worked for years to create the CBD plants used to make Charlotte's Web, dubbing them "hippie's disappointment" for their lack of THC. The brothers now operate a nonprofit, Realm of Caring, to help patients who cannot afford the medication.
They have been featured in national media stories, including a CNN documentary and episodes of a National Geographic show, "American Weed."
Stanley, 38, now operates Strains of Hope, a nonprofit dedicated to medical marijuana research and advocacy in the United States and abroad.
About 250 Colorado children are currently being treated, with a long waiting list due to growing limits in the law, he said.
"There's not even close to enough to satisfy the need. ... There's no question about it," Stanley said. "You have a situation here where you have a natural whole plant that's now passing the efficacy of FDA-approved pharmaceuticals."
He said he is working in Utah, Florida, Kentucky and numerous other states to help craft proposed legislation legalizing medical marijuana.
"As soon as we realize that we can't legislate morality, ... the better off we are," Stanley said.
Medical marijuana
Since California approved the use of medical marijuana in 1996, 19 states and the District of Columbia have followed suit. Two states -- Colorado and Washington -- have also approved the drug for recreational use by adults.
Despite such trends, marijuana remains illegal at the federal level and in states where it has not been legalized, including Oklahoma.
U.S. Attorney General Eric Holder said last week that the federal government was considering new rules to give "lawful" marijuana growing operations access to the banking system.
Patients with a variety of ailments -- including cancer, HIV/AIDS, Parkinson's disease and epilepsy -- have reported that medical marijuana is effective in treating their illnesses. An FDA-approved study of pediatric patients with a rare seizure disorder is underway.
How to help Zoey
Zoey Johnson's family is collecting donations to help pay her medical and living expenses while she seeks treatment in Colorado for a rare seizure disorder.
For more information on donating to Zoey, go to giveforward.com/zoeyszoneforhope
You can follow her progress on Facebook at Zoey's Zone For Hope at bit.ly/fbzoeyszone
People can also make donations through the Zoey Johnson Medical Expenses funds at the family's hometown banks -- Exchange Bank and Trust of Perry and Bank First and Trust of Perry.
Ziva Branstetter 918-581-8306
ziva.branstetter@tulsaworld.com
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