TURBOTVILLE — Cristy Harding is living John Hanger’s frustration.
“I am infuriated that other kids in the USA can try this, and we can’t,” said Harding, 47, of Turbotville. “My son needs to have the opportunity to try this.”
“This” is medical marijuana, particularly a derivative called cannabidiol, or CBD, a compound credited with bringing great relief to children with seizure disorders without the side effects of conventional medication.
Physicians with whom Harding works — she is an emergency room nurse — and know her son’s story said it is a viable next step for him. She hopes to discuss cannabidiol with her son’s neurologist because, Hardin said, “We are out of options.”
The option Harding and Jason, 13, live with includes a litany of medications with assorted side effects; strict adherence to $300 per month of supplements; a high-fat, low-carb diet that includes weighing food; home-assistance nurses so that Jason is monitored 24/7 to respond to seizures; and an unsure quality of life.
Jason’s first seizure was at age 2. Later, he was diagnosed with Lennox““Gastaut syndrome, a form of childhood-onset epilepsy that appears between ages 2 and 6 and is difficult to treat. Among its markers are frequent seizures of different types, developmental delays and psychological or behavior issues.
Jason has grand mal seizures, up to 60 a day, and has “failed” eight medications.
“None of them work,” Harding said.
Among Jason’s four medications is Depakote, used to treat seizure disorders but with a potential for liver toxicity. He’s also on Clonazepam, a benzodiazepine drug with an anticonvulsant effect, but one that is also addictive.
“He’s been on it so long, he is addicted to it,” Harding said. “It’s difficult to withdraw him from it.”
Jason also follows a strict ketogenic diet: high-fat, adequate protein, low-carbohydrates used primarily to treat difficult-to-control epilepsy. Foods in which a typical 13-year-old may indulge — pizza, french fries, pastas — are off-limits.
“His life is very stringent between his diet and his medications,” said Victoria Rosancrans, a home-care nurse who has been with Jason two years. She attends school with him five days a week to monitor him for seizures there.
“I’m with him at his desk and also help him with classwork,” she said. “Basically, I’m an arm length’s away from Jason. My eyes are on him at all times just because we never know.”
Jason’s stamina is very low, Rosancrans said.
“He’s up a few hours, we get him ready for school, he does an hour of work and then he’s wiped out,” she said.
What’s more, “He’s becoming more aware of this,” she said.
Said Harding: “That’s why we can’t keep waiting. Most 13-year-olds have Legos or action figures by their beds. We have an oxygen tank with a mask, and another mask we use. He stops breathing often and turns blue.
“People talk about the brain damage of marijuana. We’re already there. Marijuana would do the reverse in our case. It could improve his condition.”
What Harding has learned about CBD as it’s used to help epilepsy gives her hope. It could reduce Jason’s seizures to as few as three a day. He wouldn’t smoke it. Cannabidiol would be applied under his tongue.
And it’s approved for use in Colorado, where many Pennsylvania parents are moving to get it for their children whose seizures number in hundreds per day. Moving, however, isn’t an option for Harding, who is a single mother and the lone provider for Jason.
Her insurance covers 90 percent of Jason’s medical needs, which is good, but the uncovered expenses, such as nutritional supplements, some nurses care and adhering to that diet, run into hundreds of dollars of uncovered expenses.
Hanger, a candidate for the Democratic nod for governor in this May’s primary, said denying parents access to this form of marijuana is “cruel and barbaric.”
“This is coming from someone who’s never used it,” Harding said of marijuana. “I’m anti-drug. I’ve seen heroin overdoses, I’ve seen all that stuff,” she said. “For me to be advocating this for my child is astounding.”
TURBOTVILLE — Cristy Harding is living John Hanger’s frustration.
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