Responsive Neurostimulation (RNS) Therapy Alleviates Liam’s Seizures
Liam was 5 when he had his first seizure. After a bike ride, his eyes involuntarily darted back and forth – a movement known as nystagmus. He told his mom, Laura, he felt dizzy. The unusual eye movements and dizziness kept happening, so Laura and Liam’s dad Kevin sought an evaluation from a neurologist near their suburban Chicago home, who wrongly diagnosed the little boy as having migraine headaches.
When Liam went to have an MRI scan, a nurse suggested he instead needed a test to screen for seizures (an electroencephalogram, or EEG), and she was right. Over time, Liam had developed a form of intractable, or drug-resistant, epilepsy.
“I thought that diagnosis day was going to be the most challenging day of my life as Liam's mom,” Laura said. “Watching my child powerless and seizing was heart-wrenching. Little did I know that was nothing compared to what was next in the years to come.”
The grueling search for treatment that would best ease Liam’s seizures brought the family to the comprehensive Pediatric Epilepsy Center at Ann & Robert H. Lurie Children’s Hospital of Chicago, which provides complete evaluation services and specialized clinics of a team-based approach with consideration of all tailored treatments, including medications, ketogenic diet, and epilepsy surgery options. Each year the center treats thousands of children from around the country and the world, completing over 4,000 video EEGs, making it one of the busiest child epilepsy centers in the U.S.
Seeking the right treatment
Throughout his childhood, Liam tried many different medications and treatments. Medication helped mitigate seizures early on in his life but, like many patients with intractable epilepsy, helpful effects soon wore off.
After more tests, the seizures were found to come from his visual cortex, the part of his brain needed for Liam to see. Removing that visual center of the brain to control his seizures was technically feasible but not an acceptable option as the family tried to give Liam a normal childhood.
At age 11, he received a Vagus Nerve Stimulator (VNS), a surgical implant around the vagus nerve in the neck connected to a generator in the chest wall. The device delivers an intermittent current to the vagus nerve, a nerve with wide projections to the brain, to try to prevent and disrupt seizures.
While the procedure helped somewhat alleviate Liam’s seizures for several years, he started having them much more frequently at age 16, amounting to many seizures in one day.
The next step: RNS Surgery
By this time, technology had advanced, and Lurie Children’s neurosurgery team was able to offer the latest surgical therapy known as Responsive Neurostimulation (RNS). This treatment involves a small computer device placed precisely on Liam's brain to learn his brain waves. The system monitors brain activity and can record and report EEG data to the epilepsy specialist. The RNS device is then programmed to recognize and respond to seizure activity, delivering a targeted current to prevent seizures before they happen. The procedure was planned and performed by Lurie Children's epilepsy neurosurgery team, led by epilepsy surgery expert and Division Head of Neurosurgery Dr. Sandi Lam.
Laura called the RNS device a “miracle device.” Now almost 18 years old, Liam has had up to five months at a time without a seizure, and overall has had a dramatic reduction in his seizures so that he is an independent young man. He will finish high school; he enjoys fishing and playing ultimate frisbee. Dr. Lam and Lurie Children’s epilepsy specialists will continue to monitor the device and its effect on Liam into adulthood.
“We call August 25, the day they turned the RNS on, his second birthday,” Laura said. “We could not be more thankful for the superior medical care and the partnership in advocacy for Liam’s health that we have received at Lurie Children’s.”
With the expertise and support of Dr. Shaaban and Lurie Children's Chicago Institue for Fetal Health, Annie gave birth to Emmie and Gracie. Today, the girls are healthy and living life to the fullest.
After being diagnosed with ADHD, Leo began working Lurie Children's Dr. John Parkhurst. Through therapy, Leo learned how to harness his skills and strengths to better communicate with his family and friends.
In 2021, 13-year-old Isabella started suffering from chronic nerve pain across her entire body. While the road to diagnosis took time, her eventual outcome thanks to Neurosurgeon Dr. Jeffrey Raskin was a life-changing one.