As a preschooler, Bennett Caroon experienced 100 seizures a day. Doctors gave him a variety of anti-seizure medications, but nothing controlled his seizures until he tried VNS Therapy, a unique, implantable device that delivers mild pulses of stimulation through the vagus nerve to areas of the brain known to be associated with seizures.
Bennett has drug-resistant epilepsy (DRE) — a diagnosis given to patients after two anti-seizure medications fail to control seizures when used for an adequate period of time as determined by a patient’s physician. According to the Epilepsy Foundation, about one-third of adults with epilepsy and 20-25 percent of kids with epilepsy have DRE.
Bennett had his first seizure at 18 months old. At first, doctors thought it was a fluke. But he continued to have more seizures and of greater severity.
“When the seizures started happening, just one after another, I felt like I was trying to hold up a giant stack of dominoes that was just falling down on us,” says his mother, Lindsey Caroon.
After a seizure, Bennett felt groggy and emotional. His intense seizures interfered with his development, too. For example, he regressed on speech, including losing some of his pronouns. He also lost his potty training.
“The worst thing about seizures is that you feel helpless,” says his mother. “There’s nothing you can do.”
After trying eight anti-seizure medications without success, Bennett’s family sought treatment at a medical center in Washington D.C., where he had to be resuscitated after treatment failed to stop the seizures.
Caroon was frustrated and tired of feeling helpless, so she asked doctors what else could be done to help her son. That’s when the family first heard about VNS Therapy.
VNS Therapy (short for “vagus nerve stimulation therapy”) has been FDA approved since 1997. The medical device works by delivering mild pulses of stimulation through the vagus nerve to areas of the brain known to be associated with seizures. It’s placed under the skin of the chest and connects to the vagus nerve in a simple, outpatient procedure that takes less than two hours.
VNS Therapy can lead to fewer seizures, shorter seizures, and better recovery after seizures. Studies show quality-of-life benefits too, including improved mood, alertness, memory, and verbal skills.
Over 125,000 patients, including over 35,000 children, have been treated with VNS Therapy worldwide. VNS Therapy is recommended by guidelines as an add-on therapy in reducing seizure frequency in children and adults with DRE who are not suitable for resective surgery.
Common side effects include hoarseness or change in voice tone, shortness of breath, sore throat, and coughing. These side effects generally only occur during stimulation and usually decrease over time. Implant site infection is the most common side effect of the procedure and can often be resolved with medication.
While individual results may vary, VNS Therapy can help patients like Bennett manage seizures and thrive.
Bennett received VNS Therapy when he was four years old. He is 10 now and living a very normal life with his family in Colorado Springs. He loves maps and space and wants to go to space camp someday. He plays video games, as well as soccer and lacrosse. He takes one medication and compares his VNS Therapy to Iron Man’s chest piece.
“We’ve had such significant control with VNS Therapy that we went over a year without a seizure, which is just astounding to us and really amazing,” says Caroon.
When a patient has DRE, they should be seen by an epilepsy specialist who can help them get control of their seizures.
When treating patients with DRE, doctors can implement diet changes such as the ketogenic diet and try non-medication treatments, like VNS Therapy.
Find out more about VNS Therapy at www.VNSTherapy.com.