Teen with Epilepsy Shows Reduction in Seizures After Palliative Surgery
A responsive neurostimulation device has drastically improved the quality of 17-year-old Cooper Jeffcoat’s life.
By Charlotte Settle
Cooper Jeffcoat was a 15-year-old sophomore in high school when his life changed forever. He had a passion for skateboarding and dreams of joining the military or attending the police academy after graduation.
“All of a sudden, it was like I got hit by a truck,” Cooper said.
Onset of Seizures
On October 13, 2021, Cooper had his first convulsive tonic-clonic seizure—a seizure categorized by a loss of consciousness and violent muscle contractions. He was working on an assignment at school and only remembers blinking before his seizure started.
“The school called me and said that his lips were blue and he wasn’t breathing,” said his mother, Amber Snider. “They were having to resuscitate him, and I was thinking, are you sure this is my kid? Do you have the right number?”
Amber left work immediately and headed to Cooper's school, where an ambulance had arrived to take him to the hospital. After some testing, Cooper was released.
The next day, Amber stayed home with Cooper. She was talking to him from another room in the house when he stopped responding to her. She hurried to the living room to find Cooper having another tonic-clonic seizure and resuscitated him with CPR. From that point on, Cooper began having seizures almost every day.
“Our whole life just did a 180,” Amber said.
Diagnosis and Treatment Options
Cooper's care team at Cook Children’s performed many scans and tests to determine the cause of his seizures. An MRI revealed a cavernous malformation—a group of tightly packed, abnormally small blood vessels—in the left frontal lobe of his brain. Cooper then underwent a magnetoencephalogram (MEG) to map out the electrical charges in his brain and determine if they were related to the malformation.
“Under that evaluation, his epilepsy was consistent with generalized epilepsy and found to be completely independent of his malformation,” said Cooper's neurologist, Cynthia Keator, M.D.
Over the next several months, Cooper was prescribed roughly six different types of medication, none of which stopped him from having disabling breakthrough seizures. Each seizure slowed him down and affected his motor skills and memory. During one of his seizures, Cooper fell and dislocated his shoulder. He has done so roughly 20 more times since.
When it became clear that his medications were ineffective, Cooper's doctors started to consider palliative surgery options.
“Palliative means we know can’t fix this 100%, but we can likely significantly improve the overall quality of life and cognitive function of the patient,” Dr. Keator said.
Autism and Epilepsy
Cooper is on the autism spectrum, which has been known to have a strong association with seizures.
“We know children with autism are more likely than the general population to develop seizures or epilepsy,” said Dr. Keator. The reason, she says, is yet to be fully understood.
“We know of many genes that are associated with epilepsy and autism, but there are probably thousands of others that we have yet to discover,” she said. “We just don't know the underlying gene or combination of genes that answer why some children with autism develop epilepsy.”
Responsive Neurostimulation Device
According to Dr. Keator, the two main treatments to consider for generalized epilepsy that don’t respond to medication are deep brain stimulation and responsive neurostimulation. Both methods involve the implantation of a device into the brain that sends a signal or impulse to disrupt the electrical activity that causes a seizure.
After a very thorough evaluation, Cooper was deemed a great candidate for the implantation of the responsive neurostimulation (RNS) device.
“The RNS allows us to put electrodes down into areas of the brain that are responsible for either generating seizures or mediating the network through which seizure signals are sent,” said Cooper's neurosurgeon, Daniel Hansen, M.D.
The implanted electrodes can detect abnormal electrical activity in the brain within microseconds, often before a seizure even begins.
“When the device detects that activity, it's able to send a small electrical impulse through the electrodes to disrupt that abnormal electricity,” Dr. Hansen said. “Ideally it never becomes a full-blown seizure, or at least a full-blown clinical seizure where we would see outward manifestations of it.”
On October 27th, 2022, Cooper had his RNS device implanted.
According to Dr. Hansen, the entire surgery only takes up to two hours. Most patients don’t experience much pain afterward and are even able to go home the very next day. Cooper's surgery went off without a hitch. Once the device was in place, his care team was able to start tracking his seizure activity immediately.
“We actually train the device to recognize his specific type of electrical pattern so the treatment is really tailored to him,” Dr. Hansen said.
Typically, by the time a patient comes back for their first follow-up after surgery, there is enough data to train the device on how to disrupt their unique seizure activity.
After his surgery, the time between Cooper's seizures gradually began to increase. His first seizure-free period was 15 days, followed by one month, then two months. Cooper still takes some medications, but thanks to the RNS device, he will hopefully be able to wean off of them eventually.
“The seizures have really died down,” Amber said. “He can tell when he's going to have one because it'll send an electric shock, and every once in a while he can feel it.”
The RNS device also decreases the time it takes for Cooper to return to a normal state of functioning after a seizure.
“It took him hours to get back to some kind of normalcy before,” said his father, James Snider. “The first time he had a seizure with the device, he was already almost back to Cooper within 10 minutes.”
Finding Strength in Faith
Cooper's family attributes his improvement largely to their faith in God and the power of prayer.
A few weeks before Cooper’s RNS device was turned on, a kind stranger asked to pray over James. Without knowing anything about Cooper, the stranger somehow knew that James had a son who was suffering from seizures and shoulder troubles. He reassured James that something was about to drastically improve Cooper’s life. This encounter strengthened James’s faith in the RNS device and his hope for healing.
“If God’s given a blessing, I want his blessing to be known,” James said. “There might be a family down the road that's going through the same thing and needs to hear our story.”
Continued Improvement With RNS
“All of the literature on the device tells us that the initial seizure response within the first couple of years is very often improved upon over the subsequent years,” Dr. Hansen said. “For reasons that are not entirely understood, the seizure network and modulation component really seem to continue to improve over very long periods of time.”
Studies in adults have shown continuous improvement in seizure control rates even ten years out from surgery. These findings are extremely promising for Cooper, whose symptoms should only continue to lessen given his great response to the device so far.
“The RNS is wonderful for children who previously had no other options for seizure control,” Dr. Hansen said. “This has been a really big, life-changing advancement.”
Cooper is now a senior in high school. While he was unable to attend school before his surgery, he is now able to go twice a week.
Video games, writing, and drawing bring Cooper joy. He enjoys talking to his friends online and sketching video game characters, anime, and superheroes.
Though Cooper’s dreams have changed since he was diagnosed with epilepsy, he still has high hopes for his future. He wants to attend Sam Houston State University and earn a degree in Criminal Justice so he can become a forensic psychologist.
Though he’s feeling more like himself these days, Cooper knows the road ahead of him will not be easy. His seizures have lessened, but his battle with epilepsy is not over.
“There will be some hard days, but as soon as I get through it, it’s going to feel like a huge achievement,” he said. “I don't want people to recognize me for my seizures. I want people to recognize me for my perseverance.”