A sign of hope for children

Third in a series.

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, 31/2 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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This report is part of the project titled "America's Weed Rush," an investigation into the legalization of marijuana.

It was produced by the Carnegie-Knight News21 initiative, a national investigative reporting project involving top college journalism students across the country and headquartered at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University. For the complete project, including additional stories, videos and interactive elements, visit http://weedrush.news21.com.

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