Pubdate: Sun, 26 Jan 2014
Source: Oklahoman, The (OK)
Copyright: 2014 The Oklahoma Publishing Co.
Contact: http://www.newsok.com/voices/guidelines
Website: http://newsok.com/
Details: http://www.mapinc.org/media/318
Author: Ziva Branstetter

OK PARENTS WITH AILING CHILDREN CONSIDER MOVE TO COLORADO FOR MEDICAL
MARIJUANA

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 one 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 oilbased 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.

The 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 cannabis 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 3year-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 being weaned off 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.

Getting the 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 (oil) 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.

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," Stanley
said, "... the better off we are."  
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MAP posted-by: Jo-D