When Chloe was about 2, her mother, Brandi, noticed her daughter's head occasionally would dip down and her eyes would flutter. Chloe's tic began happening more frequently, until it increased to multiple times a day. During her 3-year-old checkup, Chloe had one of the spells in front of her doctor.
“He looked at me and was like, ‘I don’t think that’s just a tic. We need to look to see what kind of activity is going on in her brain,'" Brandi recalls. "At that point it really kind of got real for me.”
Tests revealed Chloe had abnormal brain activity.
One morning while they were waiting for final test results, Brandi found Chloe in a lethargic and catatonic state. When Brandi called the doctor, he suspected Chloe had had a seizure. Chloe was given anti-seizure medication, but after three months, it still wasn't working. Chloe was having as many as 200 to 300 seizures a day and had to wear a helmet to protect her head from falls.
Chloe was diagnosed with a GLUT-1 deficiency shortly after she turned 4. The condition starves the brain of glucose, which is fuel for the brain. Chloe was referred to a specialist, who suggested she participate in a clinical trial for castor bean oil to treat the seizures.
“Within less than an hour of her ingesting the oil, she began talking in full sentences," Brandi says.
Pediatrician Dr. Jim Sears explains that glucose transporter deficiency is a genetic defect in the protein that carries glucose to the brain cells.
“In everybody else, your brain has to use glucose for energy,” Dr. Sears says. “But in Chloe, that glucose couldn’t get in there, so the brain cells were starved for energy, causing seizures and developmental delay.”
Dr. Sears explains that the castor bean oil works because the liver breaks down the oil into ketones, which the brain can use as an alternative source of energy.
"So within an hour, she had the energy that her brain needed, was able to shut the seizures off, and she gets to lead her life now using a different fuel source for her brain," ER physician Dr. Travis Stork says.
Dr. Travis reports that the majority of the participants in the trial led by Dr. Juan Pascual, an associate professor of neurology at the University of Texas Southwestern, showed improvements after taking the castor bean oil.
Family medicine physician Dr. Rachael Ross notes that this is not the same as the castor oil you can buy in the store.
For more information about the research into castor bean oil for seizures, visit the University of Texas Southwestern's Rare Brain Disorders Program website.