ENID, Okla. —
Perry resident Marty Piel will talk about his granddaughter, Zoey Johnson, during a Feb. 12 hearing in the Oklahoma Senate Appropriations Subcommittee on Select Agencies.
The hearing is for senators to listen to scientific evidence regarding medical use of cannabis extracts.
Piel’s daughter, Mallory Johnson, moved in September to Colorado so Zoey, 6, could have access to cannabidiol, an oil tincture made from cannabis extract. The oil, administered as drops placed under Zoey’s tongue, has greatly eased her seizures caused by Dravet syndrome. Zoey no longer needs one of the eight anti-seizure prescriptions she was taking at the time she moved to Colorado. Stiripentol, an orphan drug imported from France costing $1,500 per month, is the first medication removed from Zoey since she began getting cannabidiol. Zoey continues to take Depakote, Keppra, Zarontin, Onfi, potasssium bromide and the emergency drug Diastat.
Zoey was diagnosed with Dravet syndrome, a catastrophic form of epilepsy, at age 3 after 24 medical tests to determine the cause of seizures that began at 20 months. With seizures occurring as frequently as 100 in 15 minutes, finding the cause was of paramount importance.
“When Zoey went to get her spinal tap, she sat up and shook the doctor’s hand,” Piel said.
The search for answers took Piel, his wife, Sherry Piel, his daughter and Zoey to hospitals in Tucson, Ariz.; Phoenix; Fort Worth, Texas; and Miami.
At one time, Zoey was taking 22 prescription drugs.
“When she was having all those seizures, we had to educate every doctor in the ER,” Johnson said. “They’d say she’ll probably grow out of it.”
“I don’t know how many times we’d hop in the car and think, ‘God, just let her be alive when we get there,’” Piel said. “That’s not what grandparents should have to think.”
Now that Zoey is being given cannabidiol, her mother said she’s made “unbelievable progress.”
“The first week she said 12 new words,” Johnson said. “And she said ‘Love you, too.’”
Being on this treatment has helped a lot with Zoey’s cognitive and learning skills, Johnson said.
The Colorado Springs dispensary Zoey visits for her cannabidiol uses a product made from specially bred cannabis plants low in tetrahydrocannabinol, or THC, the psychoactive compound in marijuana that makes people “high.”
“They’re not getting people high, they’re just calming the brain,” Piel said.
Piel believes other Oklahoma parents whose children could benefit as much as Zoey has from cannabidiol should be allowed access to it.
“Why do families have to leave their support systems in order to be able to get treatment?” Piel said. “There are families in Oklahoma who should be able to get this treatment.”