Pubdate: Tue, 25 Aug 2015
Source: Philadelphia Inquirer, The (PA)
Copyright: 2015 Philadelphia Newspapers Inc
Contact:  http://www.philly.com/inquirer/
Details: http://www.mapinc.org/media/340
Authors: Lex Talamo, Nick Swyter, and Calah Kelley Lex Talamo is a 
Hearst Fellow. Callah Kelley is a Knight Foundation fellow. NEWS21
Series: America's Weed Rush an Investigation into the Legalization of Marijuana
Note: Third in a series

Special Report Legalizing Marijuana

A SIGN OF HOPE FOR CHILDREN

That's How Parents See Medical Marijuana, Though Doubts Remain.

PITTSBURGH - In Room 716 of Children's Hospital of Pittsburgh, 
12-year-old Hannah Pallas is motionless, but for an occasional turn 
of her head and the blink of her eyes, following a series of 
life-threatening seizures.

Sydney Michaels, 5, is down the hall in Room 749, waiting to be 
discharged after 15 grand mal seizures within 36 hours.

Their mothers have known each other for years, though it's a 
coincidence caused by their daughters' epilepsy that brought them to 
the unit on the same day.

The women are part of a tenacious group of parents and marijuana 
advocates nationwide demanding politicians and legislators legalize 
medical marijuana treatment for their children, whose medications 
have had limited success treating seizures and other severe conditions.

"This is something that needs to happen across the country so that 
every child who might need this would have access," said Julie 
Michaels, a member of Campaign for Compassion. "Why should the state 
lines be the factor as to whether my child can get help or not?"

Sydney is among a few hundred children in a nationwide clinical trial 
to test marijuana-based treatments for epilepsy. But Hannah is not. 
"I'm watching my daughter die every day," said her mother, Heather 
Shuker. "Hannah has so many seizures, and every seizure could take 
her from me."

Pennsylvania is one of roughly two dozen states where medical 
marijuana is illegal. A bill to change that has support from the 
Senate and Gov. Wolf, but has stalled in the state House. (Both New 
Jersey and Delaware have legalized medical marijuana.)

Since 2014, 17 other states have legalized the use of 
marijuana-derived cannabidiol (CBD) in children: Utah, Wyoming, 
Wisconsin, Iowa, Missouri, Oklahoma, Texas, Louisiana, Mississippi, 
Alabama, Tennessee, Georgia, Florida, South Carolina, North Carolina, 
Kentucky and Virginia.

The laws are intended mostly to treat intractable epilepsy. But 
Florida, Georgia, and Louisiana, for example, also allow limited use 
for cancer treatment.

CBD is the non-psychoactive component of the marijuana plant. It has 
yet to be proven scientifically as a successful treatment, though 
anecdotal evidence suggests it helps some children. 
Tetrahydrocannabinol (THC) is the part of the plant that produces a 
high, but it is also known - if not proven - to treat pain, nausea, 
insomnia and other symptoms.

The states that have passed CBD legislation limited the THC 
concentration of medical marijuana extracts to minimize its 
psychoactive effects.

Shuker said Hannah, diagnosed with severe intractable epilepsy and 
Lennox-Gastaut syndrome, has about 250 seizures monthly. They have 
tried more than 18 seizure medications and special diets.

Pharmaceuticals made the seizures worse, Shuker said. Hannah now has 
a surgical feeding tube because she can no longer swallow on her own. 
Doctors have said the only remaining treatment option is brain 
surgery, with risks of infection, increased seizures, or stroke.

Meanwhile, visits to the emergency room and pediatric ward have 
become routine. Shuker and Michaels say their lives revolve around 
doctor appointments and hospital stays. While other mothers track 
their children's height, these mothers use homemade charts to track 
dates, times and numbers of seizures.

Sydney is one of 25 children in a clinical trial at Children's 
Hospital of Philadelphia receiving doses of Epidiolex, a purified CBD 
created by London-based GW Pharmaceuticals that's low in THC.

"Prior to this study, she couldn't do a puzzle. After about two 
weeks, she was whipping through puzzles on an iPad," Michaels said. 
"We're talking about a kid who was seizing easily from 1,000 to 3,000 
times in a week. It was incredible."

Eric Marsh, assistant professor of neurology and pediatrics at CHOP, 
was cautiously optimistic about the results, with parents reporting a 
50 to 60 percent reduction in their children's seizures. But Marsh 
urges families to wait until marijuana-derived medications earn Food 
and Drug Administration (FDA) approval.

"It's not a miracle drug," he said. "It has interactions with other 
drugs; it does have side effects."

For many, the 2013 airing of the CNN documentary Weed was the moment 
that ignited a movement to make cannabis oil available to children. 
The report featured Charlotte Figi of Colorado, then 5, who used 
cannabis oil to treat the 300 grand mal seizures she suffered weekly.

The oil she uses, Charlotte's Web, is named after her and produced by 
Colorado-based Stanley Bros. Social Enterprises.

"We tried this on her, and it stopped her seizures," said her mother, 
Paige. "Now, 3 1/2 years later, she has two seizures a month."

Other parents inspired by Charlotte Figi's story and frustrated with 
unsupportive politicians have since moved to Colorado, where such 
treatment is legal. The state's Department of Public Health and 
Environment says its medical marijuana registry has 434 children, up 
from 60 just two years ago.

Larry Wolk, the department's chief medical officer, said he could not 
ignore the anecdotal success stories from parents, but said more 
research needs to be done.

"The problem is that it doesn't help everyone. The results are 
mixed," Wolk said. "I'm worried that we're rushing this."

Despite a lack of evidence, families are leaving their home states to 
chase the prospect that medical cannabis may be their children's last 
option. Earlier this year, 9-year-old Alexis Bortell of Dallas had 
one of her worst seizures and was taken to a hospital. A week later, 
she suffered strokelike symptoms, said her father, Dean Bortell.

Anti-seizure pharmaceutical drugs did little to stop her seizures and 
seemed to incite side effects including anger. "We had to put all the 
knives in the house up out of her reach," her father said.

They moved to Colorado this year. Today, Alexis wakes up early every 
morning to take her dose of CBD oil with a drop of THC in her new 
home in Littleton, Colo.

What follows is an active schedule: playing with a service cat, 
Skyping friends in Texas, shooting hoops, golfing practice, playing 
at the park, swimming and ending the day with frozen yogurt at 
Yogurtini. She hasn't had a seizure in 100 days.

"It has changed my daughter's life in the most positive way humanly 
possible," Bortell said. "We've got our little girl back."

Despite its legalization in some states, obtaining CBD is not as 
simple as buying it off a dispensary shelf. States such as Alabama 
and Tennessee only dispense oils through clinical trials at 
universities. Florida and Texas allow for the production and 
distribution of oils to qualified patients, but their programs are 
not yet operational. Other states' laws don't define access.

Parents say the list of qualifying conditions for medical marijuana 
treatment should be expanded, to include cancer and bowel diseases. 
But the laws' most contested component is the THC limits.

The FDA, which monitors most clinical trials, has not approved any 
marijuana-related treatment.

"We understand that parents are trying to find treatments for their 
children's medical conditions," it says. "However, the use of 
untested drugs can have unpredictable and unintended consequences."
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MAP posted-by: Jay Bergstrom