Lillyann Baker is 3 years old, but her brain has barely aged since she was an infant.
For most of her life, Lillyann's days have been filled with seizures. The toddler suffered a severe brain injury after being dropped at 7 weeks old. The convulsions started after she came out of a medically-induced coma.
"Multiple seizures every day,” said mom Cassandra Stephan. “She'd have maybe an hour break, go right back into another one."
She says her only hope controlling the seizures was to dose Lillyann with two powerful pharmaceuticals. The Dundalk woman felt helpless.
"Pretty much feeling like I failed her, cuz there's nothing I could do as a parent at first, just hold her until she came out of it," Cassandra said.
There's a growing community of parents who are turning to medical marijuana to treat childhood seizure disorders. Many maintain cannabidiol oil, or CBD, reduces epileptic attacks in the sick kids.
CBD is one of hundreds of active chemicals found in the cannabis plant. The extract has low levels of THC, so users won't have any psychoactive effects like feeling high or stoned.
Desperate to help her daughter, Cassandra bought some of the CBD drops online to give to Lillyann in addition to the two prescription meds. She says it's been life-changing, and the seizures have completely stopped.
"This little tiny tube, just a few drops a day, if I can get it to just this, I will be the happiest mother alive," Cassandra said.
CBD oils are easy to find online, but they're not FDA approved, and their legality is questionable.
Cannabis researcher at Johns Hopkins University School of Medicine, Ryan Vandrey says people need to be cautious. Warning you have no idea what you're getting when you order these items from internet companies.
"These are products that are manufactured outside of the current regulatory process for medicine, so that's a big risk,” Vandrey said. “Not only may it not have the cannabidiol that you're looking for, it might have other harmful constituents."
He says there are clinical trials being done to study the use of CBD for seizure disorders, but it's an area of treatment he feels needs much more exploration.
"I think that there's a lot of promise there for cannabidiol as a potential treatment for childhood seizure disorders, but we need additional research to understand whether there are certain subgroups that have greater benefit, and whether there's harm, and globally how these cannabinoid products can translate and compare to other treatments," said Vandrey.
Without that solid proof, he recommends people talk to their doctors before trying medical marijuana products, and look into joining a drug study with clear controls.
For Cassandra, she has all the results she needs. She's been giving Lillyann daily CBD drops for more than a year, and the seizures still haven't returned, allowing the little girl to grow and progress.
"She shows when she's happy, when she's mad, she laughs all the time, she's very vocal,” Cassandra said. "It made our miracle happen."
Cassandra says she plans to speak with Lillyann's physician about weaning her off of the two pharmaceuticals she's still taking for the seizures.
The Federal Government says cannabis extracts and marijuana are among the most addictive drugs with no medicinal value.
Follow Catherine Hawley on Twitter@CatherineABC2 and like her onFacebook
