FORT WORTH — One FDA-sanctioned study of cannabis oil is offering children with severe seizures something that has been in short supply in their young lives: hope.
Kadience Mulanax and her parents don’t know whether she’ll receive the cannabidiol, a compound derived from marijuana, or a placebo. But they know that the disease that affects the 7-year-old, tuberous sclerosis, has been debilitating.
“I don’t know that she’s ever had a time where she’s been completely seizure free,” said her mother, Laci Mulanax.
Tuberous sclerosis is rare — estimates put the number of patients at 1 million to 2 million in a world population of 7.5 billion, roughly 1 in 4,000 people — and genetic, causing noncancerous tumors to grow in many parts of the body. When those tumors grow in the brain, the body often responds with seizures.
“We did 28 days of counting and she had 90 — 89, 90” in that time, said Kadience’s father, Brooks Mulanax.
The study is open to 210 patients and being conducted at 40 medical centers worldwide, said Dr. M. Scott Perry, who is the lead researcher at Cook Children’s Medical Center here.
Early studies have shown that cannabidiol, which doesn’t create the same high as marijuana, has promise in controlling seizures in people with epilepsy. Its efficacy in that area also is undergoing clinical trials.
“We’re trying to figure out how does it work for the treatment of seizures,” Perry said.
The Mulanax family now regularly drives more than 300 miles one way from its home in Lubbock, Texas, to Cook Children’s Medical Center to take part in the clinical trial.
“This is part of an FDA (U.S. Food and Drug Administration) study,” Perry said. “This is a little different from the hemp oils you’d get from the Internet. This is a true pharmaceutical drug, meaning it’s under a lot of scrutiny.”That scrutiny made the decision easy for Kadience’s parents.
“I wasn’t ever of the mindset that ‘Hey, you’re giving your kid marijuana’ because that is not the case whatsoever,” Brooks Mulanax said.
Kadience is one of five children in the drug study at Cook Children’s. The hospital has the ability to include up to five more patients in the clinical trial.
“What we’re seen so far in the studies we’ve done is that it does work,” Perry said. “In the three trials they’ve released results on so far, the average (seizure) reduction was 40%.”
This trial gives Perry hope. It gives the Mulanax family hope, too.
“We don’t hold her back,” Brooks Mulanax said of Kadience. “So if this is just another way we can normalize her life and growing up, we’re all about it.”
credit:usatoday.com