A boy with severe epilepsy has become the first patient in the world to test a new device placed in his skull to control seizures.
The neurostimulator, which sends electrical signals deep into his brain, has reduced Oran Knowlson’s daytime seizures by 80%.
His mother, Justine, told the BBC that he was happier and had “a much better quality of life.”
The surgery, which is part of a trial, took place in October at London’s Great Ormond Street Hospital, when Oran, now 13, was 12.
The boy from Somerset (254 kilometers west of London) suffers from external Lennox-Gastaut syndrome, a form of epilepsy resistant to conventional treatments that he developed when he was three years old.
Since then he has suffered daily seizures ranging from 2 dozen to hundreds.
When the BBC first spoke to Oran’s mother last autumn, before the surgery, she explained how Oran’s epilepsy dominated his life.
“It has stolen his entire childhood,” he said.
The woman said Oran had a variety of different seizures, including ones in which he would fall to the ground, shake violently, and lose consciousness.
The mother reported that sometimes the child stopped breathing and needed emergency medication to resuscitate him.
Oran also has autism and ADHD (attention deficit hyperactivity disorder), but Justine said his epilepsy is by far the biggest obstacle to his life.
“He was a fairly intelligent three-year-old, and within a few months of starting his seizures, he deteriorated rapidly and lost many skills,” she recalled.
Oran is part of the CADET project: a series of trials evaluating the safety and effectiveness of deep brain stimulation to treat severe epilepsy.
Great Ormond Street Hospital, University College London, King’s College Hospital and the University of Oxford are participating in the initiative.
The neurotransmitter Picostim is manufactured by the British company Amber Therapeutics.
How the device works
Epileptic seizures are caused by abnormal bursts of electrical activity in the brain.
The device, which emits a constant pulse of current, aims to block or interrupt abnormal signals.
“I want him to regain some of himself through the fog of seizures. “I would like to have my son back,” Justine said before Oran’s surgery.
The surgery, which lasted about eight hours, was performed in October 2023.
The team, led by pediatric neurosurgeon Martin Tisdall, inserted two electrodes deep into Oran’s brain until they reached the thalamus, a key part for the transmission of neural information.
The margin of error in cable placement was less than one millimeter.
The ends of the wires were connected to the neurostimulator, a 3.5 cm, 0.6 cm thick square device that was placed in a recess in Oran’s skull where the bone had been removed.
The device then screwed the neurostimulator into the surrounding skull to lock it in place.
Deep brain stimulation has been tried before for childhood epilepsy, but until now neurostimulators have been placed on the chest, with wires running to the brain.
“We hope that this study will allow us to identify whether deep brain stimulation is an effective treatment for this severe type of epilepsy,” Tisdall told the BBC.
“And it is also looking at a new type of device, which is particularly useful in children because the implant is in the skull and not in the chest. We hope this will reduce potential complications,” she added.
Scientists hope to decrease the risk of infections after surgery and of device failure.
Oran was given a month to recover from the operation before the neurostimulator was activated.
When the device is on, the boy cannot feel it. And he can recharge the device every day via wireless headphones, while he continues with the things he enjoys, like watching TV.
The BBC visited Oran and his family seven months after the operation to see how they were doing. Justine told us there had been a huge improvement.
“He is more alert and does not have seizures during the day,” she explained.
His nocturnal seizures are also “shorter and less severe.”
“I’ll definitely get it back slowly,” he said.
For his part, Tisdall stated that “we are delighted that Oran and his family have noticed such a great benefit from the treatment and that it has dramatically improved his seizures and quality of life.”
The young man is now taking riding lessons, something he clearly enjoys.
Although there is a nurse available with oxygen and one of his teachers is always nearby just in case, neither of them have been necessary so far.
As part of the trial, three more children with Lennox-Gastaut syndrome will receive the deep brain neurostimulator.
Currently, Oran receives constant electrical stimulation from his device.
“The future looks brighter”
But in the future, the team plans to have the neurostimulator respond in real time to changes in your brain activity, in an attempt to block seizures when they are about to occur.
Justine admitted to being very excited about the next phase of the trial.
“The Great Ormond Street team gave us hope… now the future looks brighter.”
Oran’s family knows that his treatment is not a cure, but they are optimistic that he will continue to emerge from the shadow cast by his epilepsy.
The Picosim external neurostimulator, owned by Amber Therapeutics, has also been used to treat patients with Parkinson’s disease.
Another type of skull-mounted neurostimulator has been used in the United States to treat epilepsy.
Keep reading:
* What is the “Mozart effect” and how does it help people with epilepsy?
* Epilepsy in our Hispanic community
* What should we do when faced with an epilepsy attack
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