"It was just a nightmare," Benton said, adding that the seizure medications didn't work and made Addyson strangely aggressive or sleepy. "We could not find anything to control them and they were getting worse."
The Bentons were watching a documentary about marijuana that prompted them to move to Colorado to get medical marijuana for Addyson in the hopes that it would give her some relief. At the time they moved in March, Addyson, 3, couldn't say her name and was developmentally delayed, Benton said.
In consultation with Dr. Margaret Gedde in Colorado, Benton said, they tried a few marijuana-derived products and found that a patch that they put on Addyson's ankle each morning reduced her seizures.
"Six hours after we put it on her, she lit up," Benton said. "She stared mimicking hand gestures, talking, mimicking words on TV," Benton said.
Gedde said she's specialized in medical marijuana for adults and children since about 2010, and she's neither a pediatrician nor a neurologist, but she's part of her patients' overall care team. She said she's one of a small number of doctors willing to sign medical marijuana cards in Colorado, where medical marijuana is legal, but she said there's still stigma around it.
"As long as cannabis is listed as schedule 1 substance, it continues to make nothing straightforward," Geddee said. Schedule 1 drugs include heroin and ecstasy, according to the federal Drug Enforcement Agency.
On Monday, Benton said she only counted three visible seizures from Addyson all day.
"I was just blown away," Benton added. "I never thought we would be here."
Addyson's doctors were unavailable for comment.
Dr. Max Wiznitzer, a pediatric neurologist at University Hospitals Rainbow Babies and Children's Hospital in Cleveland, said that while he doesn't doubt that marijuana-based products can have a positive effect for some epileptic patients, there isn't enough data to show that the benefits outweigh the risks. Wiznitzer has not treated Addyson.
He said without good studies, it's impossible to know what such products will do to developing brains.
"Is the use of this product going to have some not-well-recognized-now effect on brain development that might be worse than what the underlying condition was?" he asked. "You're not talking about some 50-year-old person smoking marijuana."
Wiznitzer said it's not clear whether these non-hallucinogenic products truly don't cause hallucinations, and that that a recent study of anecdotal information revealed that parents who moved to Colorado with their epileptic children were more likely to report positive effects from medical marijuana products than parents who lived in Colorado to begin with. But they didn't have the same diagnosis as Addyson, and they weren't using the same products.