Epilepsy Team Expands Use of Responsive Neurostimulation to Children Who Have Drug-Refractory Generalized Seizures
In 2019, Cincinnati Children’s was one of the first pediatric hospitals in the country to use responsive neurostimulation (RNS) off-label to treat kids with drug-refractory seizures for whom resection or ablation surgery is not a safe option. Initially, the epilepsy team used RNS on children with well-localized seizure foci. This year, we expanded our selection criteria to include some patients with generalized seizures.
RNS is a closed-loop feedback system that includes a neurostimulator generator placed inside the skull that is connected to electrodes positioned in areas of seizure focus. The U.S. Food and Drug Administration approved RNS in 2013 for adults with refractory, focal onset seizures with no more than two seizure foci.
One Patient’s Experience with RNS
One of the first patients at Cincinnati Children’s with generalized seizures to receive an RNS implant was a 15-year-old named Neave. Neave began having seizures at 16 months but was seizure-free with medication until age 8. Since then, multiple drugs and a ketogenic diet have not led to seizure freedom.
In 2020, she began vagal nerve stimulation (VNS) with limited results. By the end of 2022, Neave was experiencing one or more drop seizure clusters daily, with 30 or more seizures per cluster, some resulting in emergency medical care. She also had many absence seizures each day.
Seizures and anti-epilepsy medications have taken a toll on Neave. She struggles in school, lagging behind her peers academically and socially. “Neave’s seizures were getting worse and worse even with VNS and five medications,” says her mother, Kathleen. “She told us, ‘I will do anything to make my seizures go away.’”



