If your child has seizures, something as routine as putting them to bed can be fraught with anxiety. What if the child has a seizure overnight? Should the parent sleep in the same room as their child? What if they don’t hear their child having a seizure?
Neurologists at Le Bonheur Children’s Hospital are working with researchers on a clinical trial to validate Nelli®, an artificial intelligence (AI) technology that has the potential to ease parental anxiety and detect a child’s seizures. Le Bonheur is the first hospital in the United States to test this technology for its use with children.
“If we can validate this technology, it would provide great peace of mind to parents. If their child is not seizure free at night, they could be alerted and attend to their child in case of a seizure,” said James Wheless, MD, chief neurologist and co-director of Le Bonheur’s Neuroscience Institute. “One of our goals is identifying technology that can help us help families.”
Le Bonheur’s Neuroscience Institute has long been involved in trials to examine technology that detects, diagnoses and treats seizures. The Nelli® system is just one in a long line of technologies that Le Bonheur physicians have investigated to benefit their patients.
Nelli® consists of a personal recording unit (PRU) that contains a computer, camera and microphone. The child does not wear anything, and nothing is connected to them. The PRU captures movement and sound and then analyzes them via AI algorithms to determine if they are indicative of seizures. The system uses advanced machine learning techniques to continue refining its ability to detect seizures as it learns more movements and sounds that indicate a seizure event. The system also generates a report for a physician to review their patient’s seizure activity.
But the system is still learning, particularly with detecting children’s seizures. That’s why its creators contacted Wheless to assist with a clinical trial validating its use for children using the Epilepsy Monitoring Unit (EMU) at Le Bonheur.
“We have a robust and busy EMU that captures many types of seizures,” said Wheless. “We also have a track record of testing seizure detection devices for families — we understand the concept and have a history of participating in many of these trials to use technology to improve the lives of our patients and families.”
To date, Le Bonheur’s Neuroscience Institute has been involved in 24 studies that use technology to help children with epilepsy. Four of those studies investigated epilepsy treatments with technology, such as responsive neurostimulation (RNS) and vagus nerve stimulation (VNS), including studies to bring VNS to market for use in children. So far, Le Bonheur has conducted 11 trials to investigate technology that detects seizures.
And now Wheless and Le Bonheur’s neurologists are helping Nelli® learn to better detect seizures by reviewing the results produced by the system to improve the algorithms and provide a more accurate seizure report. If a child in Le Bonheur’s EMU has a seizure, but Nelli® doesn’t label it as such, the video EEG system in the EMU will pick up the seizure event. Le Bonheur neurologists can mark the event as a seizure in the system’s stored memory. From then on the system will register that movement or sound as associated with a seizure. In this way, Le Bonheur neurologists are determining which seizures types the AI is missing and then helping the AI to improve.
The ultimate goal is to validate the system so that parents can use Nelli® at home as a seizure detection and management system. Any movements and sounds would instantly run through the database. If the movements and sounds are associated with seizure events, the system would notify in near real time. This way, parents could sleep better at night and have peace of mind knowing their child was under constant monitoring.
The system could also be valuable for neurologists as they look to best treat their patient’s seizures. Neurologists could use results from the system to determine whether or not a patient is having seizures and what kind, which is helpful information to adjust treatment and alert physicians if the child’s seizure control is inadequate.
“At this stage, the technology looks very promising. Nelli® could improve patient care by giving parents peace of mind. If a caregiver is exhausted — either from not sleeping at night due to a concern that their child will have a seizure or from sleeping with the child — a child is not going to get as good of care,” said Wheless.
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