Pubdate: Mon, 19 May 2014
Source: Albuquerque Journal (NM)
Page: C1
Copyright: 2014 Albuquerque Journal
Author: Dave Philipps, McClatchy Newspapers


As Evidence Mounts That Marijuana Helps Kids With Seizures, Legal
Landscape Changes

COLORADO SPRINGS, Colo. - The Swann family moved from Alabama to
Colorado last fall to try save their daughter's life with marijuana.
It appears to have worked. And in the process, the Swanns and others
like them have changed laws across the country so more children can
have the same chance.

Fourteen-year-old Allie Swann was having up to 100 seizures per day
that years of treatments, including surgery to remove part of her
brain, and debilitating drugs had not helped.

"She was on the same stuff they use for lethal injections in Alabama,"
her father, Butch Swann, said. "It couldn't go on."

So they came to Colorado. Like 115 other marijuana refugee families,
as they call themselves, from 43 states, they left family, jobs and
homes so they could try oil made from a special strain of cannabis
that reportedly quelled the seizures in a handful of kids in Colorado

With federal laws making medical marijuana research nearly impossible,
none of the oil's healing properties have been scientifically
verified, and the families have sometimes been dismissed as desperate

Now, six months after the first big group of children started using
the oil, many families like the Swanns say they see remarkable
improvements. A handful of families have returned home, some because
of the strain of having uprooted to move here, others for other reasons.

For many of the kids, their seizures are dropping in number and
intensity, and kids long lost to their medical conditions - or the
powerful drugs used to treat them - are rediscovering the world.

News of the success has spread across the country, prompting the
medical establishment to reassess cannabis and legislators to rewrite

This spring, 18 traditionally conservative states, mostly in the South
and Midwest, introduced medical marijuana bills narrowly tailored to
epileptic children. Seven have been made law, with several more close
to passing.

Butch Swann spoke repeatedly to radio and TV stations in Alabama about
how the oil, which cannot get users high, has helped his daughter and
could help thousands of others in the state. State legislators
approved a bill giving children access to the oil unanimously.

"I hope this Alabama-led medical study can bring relief to children,"
Alabama's governor said at the signing.

Butch Swann laughs when asked about it.

"I wouldn't have thought in a million years Alabama would pass medical
marijuana in any form," he said. "But I think people can see this is

Maybe soon, he said, his family can return to Alabama. But in the
meantime, he is enjoying a new life with his daughter.

Allie, who has the mental capacity of a 3-year-old, used to fly into
rages daily, screaming for hours and biting her hands until they bled.

Now she has a new air of calm contentment. Her hands have healed. An
EEG brain scan from a year ago showed a nonstop quake of seizure
activity. An EEG done a few weeks ago in Denver shows none.

On a recent warm evening she sat on the front steps of the family's
rented house in Fountain, Colo., with her father, watching her younger
brothers play ball.

"This is something we could never do before, just sit and enjoy life.
Her life was just a storm," Butch Swann said. "Now we can take her
shopping, go out to eat, just be a family together. It's the answer to
our prayers."

Allie leaned over and silently gave him a kiss.

There are now 180 children in Colorado taking the oil, with thousands
more on a waiting list. Other kids in Colorado and 19 other states
where medical marijuana is legal are using similar oils made from
other cannabis strains.

The oil is not a magic potion that suddenly returns these kids to
perfect health, but many parents say it controls seizures better than
anything they have tried.

Though a handful of kids who tried the oil saw no benefit, the vast
majority have seen seizures significantly reduced with no negative
side effects, said Dr. Margaret Gedde, a Colorado Springs physician
who is tracking the young marijuana patients.

Of the 47 patients who started taking the oil this fall, 28 percent
reported more than 80 percent reduction in seizures, she said. Another
49 percent reported some reduction in seizures and enough other
benefits, including improved mood and awareness, that they continue to
use the oil. Another 23 percent either stopped using the oil because
it made seizures worse, was ineffective, or because they moved back to
a state where the oil is banned.

"This is what is called anecdotal evidence, but it is also very real,"
said Gedde, who now has 195 pediatric marijuana patients. "We have 78
percent of patients benefiting from this. Often it allows them to get
off more dangerous medications. Clearly it has a role in treating epilepsy."

Debbie Foster is one of those who returned home.

Her 14-year-old daughter Lydia was having up to 12 seizures per day
when they left their farm and half the family in rural Pennsylvania to
come try the oil. Lydia's seizures soon dropped by half. But, her
mother said, the financial strain was too great. While insurance pays
for pharmaceuticals that did not help Lydia, it won't pay for
cannabis, for which the family paid $500 a month.

"Financially it was a disaster, but it also cut our family in half,"
said Debbie Foster. "It feels like you are losing some kids to save

The Fosters returned to Pennsylvania in March, where Lydia is trying
to get the same benefit from a much less potent hemp oil that is legal
in the state. "We'll just have to wait and hope they change the law
here," Debbie Foster said.

For every family that leaves Colorado, more move here every week. The
Stanley brothers, five local brothers who grow Charlotte's Web, the
special strain of marijuana, now have more than 5,000 people on the
waiting list, including 500 international patients from 54 countries.

At the same time, clinical trials of the oil have started in New York,
which means a version of the drug could eventually be approved by the
Food and Drug Administration.

The Epilepsy Foundation this spring called for all epileptic children
to have access to cannabis, saying, "Nothing should stand in the way
of patients gaining access to potentially lifesaving treatment." 
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