Pubdate: Wed, 28 Aug 2013
Source: Salt Lake Tribune (UT)
Copyright: 2013 The Salt Lake Tribune
Author: Kirsten Stewart


"No other options are left" for the 11-year-old, she says.

Pleasant Grove - Jennifer May has tried 25 treatments in 10 years, a 
mix of prescribed diets and drugs, to quiet the lightning in her son's brain.

Only two eased Stockton May's seizures. But their toxic side effects 
ravaged his bones and immune system, and the relief was temporary.

His rare and intractable form of epilepsy, Dravet syndrome, "always 
found a way around the treatment," said his mom, a self-described 
conservative and devout Mormon who is now pursuing what for her was 
once unthinkable: medical marijuana.

Use of marijuana is outlawed in Utah. But mounting evidence of its 
medicinal benefits - from controlling cancer pain and nausea to 
reducing seizures - has pushed 18 states to legalize it for medical use.

Moved by preliminary studies and patient testimonials, May is now 
fighting for legislation to make it available to Utahns, including 
children with epilepsy.

"It's not just anecdotal. It's huge," she said. "We're talking about 
a group of kids for whom no other options are left."

She has the backing of the Epilepsy Association of Utah and a 
Facebook group of 25 to 30 like-minded moms.

"This is not smoking the drug, or getting high off it," she said, 
stressing she seeks only to legalize medical-grade products derived 
from the cannabis plant, and only for certain patients where science 
warrants it.

Utah's Republican legislative leaders have opposed any attempts to 
decriminalize marijuana, including pro-tem Senate President Curtis 
Bramble, R-Provo.

"If someone comes forward with credible research, I'll listen; I'll 
listen intently," he said Tuesday. "I'm not persuaded at this point."

But former Utah Attorney General Mark Shurtleff, a cancer survivor, 
has said he'd testify in favor of the drug's medical use.

Under current Utah law, possession of less than an ounce of marijuana 
can lead to a sentence of six months in jail and a $1,000 fine. The 
sale of any amount can result in a five-year sentence and a $5,000 fine.

"It may be a long shot in Utah," concedes Connor Boyack, president of 
a new Utah-based libertarian policy group, the Libertas Institute. 
"But if anything is going to crack the prohibitionist nut in Utah, 
it's going to be children who are suffering. We think it's a powerful 
argument to make and a principled one."

May believes it's possible to build a well-regulated program for 
producing chemical extracts and oils that are tested for safety and potency.

Such therapies are being produced now by groups that include the 
Colorado nonprofit Realm of Caring. But there's a waiting list for 
the drug and traveling with it across state lines is illegal, not to 
mention impractical for kids as sick as Stockton.

A drug company, GW Pharmaceuticals, is running investigational trials 
on a drug that, like Realm of Caring's product, is made from a strain 
that is high in cannabidiol (CBD) but does not appear to have the 
psychoactive effects of tetrahydrocannabinol (THC), another chemical 
component of marijuana.

May has submitted Stockton for possible participation in trials, 
though it would likely entail relocating to another state. Stockton 
could be among those who get the placebo, and it could take a decade 
or more for the drug to win federal approval.

She initially thought CBD was just another false lead. "We've had so 
many people approach us about all kinds of crazy treatments, from 
positioning Stockton's crib a certain way to having him wear a magnet 
in his pocket, supplements and cold laser therapy," she said.

But earlier this month, she saw a CNN report about CBD stopping 
Dravet syndrome seizures in a Colorado girl named Charlotte. The 
strain she uses, developed by Realm of Caring, is named Charlotte's Web.

"I called Charlotte's mom and was convinced," said May. "She was able 
to walk, able to eat, and went from 300 seizures a week to one."

Charlotte gets a dose of CBD, or cannabis oil, twice a day with her 
food, according to CNN.

The drug is thought to alter the way electrical impulses work in 
parts of the brain tied to seizures, but precisely how isn't known, 
said Mitch Earleywine, a psychology professor and director of 
clinical training at the University at Albany, State University of New York.

Evidence of cannabis's potential for limiting seizures dates back to 
the 1840s, including studies in labs, animals and humans, he said. 
Earleywine supports legalizing medical marijuana, noting current 
drugs for epilepsy are "either super sedating or sometimes don't work."

But nationally, doctors differ on the drug's safety and 
effectiveness. The American Academy of Pediatrics does not support 
medical marijuana prescriptions for children. Similar conclusions 
have been drawn by the Institute of Medicine and the American Medical 
Association, which have called for additional research into the value 
of smoke-free cannabinoids.

Utah hospitals - Intermountain Medical Center, Primary Children's 
Medical Centerand University of Utah Hospital - declined to make 
doctors available to comment on medical marijuana. But May said 
neurologists will tell parents "you might want to give it a try."

For parents, the challenge is weighing the risks and benefits, 
Earleywine said, acknowledging data about its use by humans with 
epilepsy is mixed. A 1980 experiment with people with epilepsy showed 
that cannabidiol could decrease seizures, for example, but a couple 
of published case studies showed that those who quit using cannabis 
ended up having more seizures.

"The data just aren't there as far as what they're used to seeing 
with a randomized clinical trial, in part because the opportunity to 
[run] those kinds of studies are hampered by legal issues," he said.

"We don't know what ratio of CBD to THC works for our kids," May 
concedes. "But for so many of us, the unknowns are better than what 
we already know."

Stockton, now 11, had his first seizure when he was about 6 months 
old. It took more than two years to diagnose him and some of the 
initial drugs he was prescribed aggravated his condition, May said 
Tuesday in her home high in the foothills of Pleasant Grove. 
Stockton, just home from school, sits on the floor watching cartoons 
and playing with puzzles. He is seizure free at this moment, but the 
electrical storms blow in more frequently, without warning, at night. 
May sleeps with him to prevent him from accidentally hurting or 
smothering himself.

May, 40, has seen Stockton deteriorate from a normal toddler to a 
preteen who has trouble walking, can't use the toilet and, aside from 
the occasional chip, has to be fed from a tube. He is developmentally 
delayed, functioning at the level of a 3-year-old.

Friends and family have been supportive of her decision to try 
marijuana, which emboldened her to go public. She knows of families 
who have made the trek to Colorado or found ways to obtain marijuana illegally.

But she's reluctant to break the law or disrupt the lives of her two 
other children, a high school senior and freshman in college.

Stories of children who use CBD and change from not walking and 
talking to running on a beach make her hopeful that Stockton's brain 
can recover some of what's been lost.

"I don't want an illegal drug," she said. "I want a medicine."
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