A boy suffering from a severe form of epilepsy is the first patient in the world to have a new device implanted in his skull to suppress epileptic seizures.
A neurostimulator, which sends electrical signals deep into Oran Knowlson's brain, has reduced the number of epileptic seizures he has during the day by 80 percent.
His mother Justine told the BBC he was happier and had a "much better quality of life".
The operation was carried out in October as part of a trial at Great Ormond Street Hospital in London when Oran, now 12, was XNUMX.
Oran, from Somerset, a county in the southwest of England, has Lennox-Gastaut syndrome, a form of epilepsy resistant to standard treatment that developed when he was three.
Since then, he has extremely frequent epileptic seizures, from two dozen to hundreds of episodes a day.
- Neurosurgery and the greatest mystery of our organism: "The brain always surprises us"
- Electrical impulses help with paralysis caused by neck injury
- Treatment of polio: From "steel lung" to vaccine
When we spoke with Oran's mother for the first time last fall, before the operation, she told us that epilepsy ruled Oran's life: "It robbed him of his entire childhood."
Oran had a number of different types of seizures, including those where he would collapse to the ground, shake violently and lose consciousness, she said.
She added that sometimes he would stop breathing and then he needed resuscitation.
Oran has autism and ADHD (Attention Deficit Hyperactivity Disorder), but Justin says epilepsy is the biggest problem: "I had a pretty bright three-year-old, but within a few months of the onset of his seizures, his condition deteriorated rapidly and he lost many skills." .
Oran participates in the CADET project, during which clinical trials are conducted on the safety and effectiveness of deep brain stimulation devices for the treatment of children with Lennox-Gastaut syndrome.
The project is run by Great Ormond Street Hospital, University College London, King's College Hospital (King's College Hospital), and the University of Oxford.
A device named “Picostim" produced by a British company Amber Therapeutics.
The device stimulates parts of the brain
Epileptic seizures occur due to excessive and abnormal electrical activity in the brain.
The role of a device that emits a constant current pulse is to block or terminate abnormal signals.
Before the surgery, Justine told us, "I want her to find a part of herself again."
"I would like my boy back."
The operation, 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, to the thalamus, a key relay station that transmits information between different parts of the brain and body.
The margin of error for setting the pin through which the signal/current is transmitted was less than a millimeter.
The ends of the pins are connected to a neurostimulator, a device 3,5 centimeters square and 0,6 centimeters thick, which is placed where the bone in Oran's skull was previously removed.
The neurostimulator is then attached to the skull to keep it from moving.
Deep brain stimulation has been tried before to treat epilepsy in children, but until now neurostimulators were placed in the chest and connected to the brain with wires.
"We hope that this research will allow us to determine whether deep brain stimulation is an effective treatment for this severe type of epilepsy, and we are also considering a new type of device, which is particularly useful for use in children because the implant is placed in the skull and not in the chest," Martin Tisdal told the BBC.
"We hope this will reduce possible complications."
This implies a reduced risk of post-operative infections and device failure.
Oran was recovering after the operation for a month before the neurostimulator was switched on.
And when it was on, Oran didn't feel it.
The device can be charged daily via wireless headphones while Oran does whatever he enjoys, such as watching TV.
We visited Oran and his family seven months after the operation to see if there was any progress.
Justine told us the improvement was huge.
"Oran is sharper and does not have atonic attacks during the day (a sudden loss of muscle tone that leads to a sudden fall of the head or body on the ground)".
His nocturnal attacks are now "shorter and weaker".
"It's definitely coming back to me slowly," she said.
"We are delighted that Oran and his family have seen such a huge benefit from the treatment and that it has dramatically reduced his seizures and improved his quality of life," said Martin Tisdal.
Oran now takes riding lessons which he clearly enjoys.
Although he is accompanied everywhere by a nurse who carries oxygen and one of his teachers, so far it has not been necessary for either of them to react.
During the trial, a deep neurostimulation device will be implanted into the skulls of three more children with Lennox-Gastaut syndrome.
Currently, the device is constantly sending electrical stimulation to Oran's brain.
- Parkinson's disease: "You don't die from it, but you die with it"
- Parkinson's disease and me, with the help of artificial intelligence
- Can Alzheimer's be slowed: Massive blood tests could provide the answer
- How Serbian doctor Haus treats fainting
'The future seems bright'
In the future, the team plans to make the neurostimulator respond in real time to changes in his brain activity to block epileptic seizures in advance.
Justine said she was most excited about this next phase of the trial: "The team at Great Ormond Hospital have given us hope... now the future looks brighter."
Oran's family is aware that this therapy does not mean a cure, but they are optimistic that it will help him get out of the darkness of severe epilepsy.
Neurostimulator "Picostim" is also used to treat patients with Parkinson's disease.
Follow us on Facebook, Twitter, Instagram, YouTube i Viber. If you have a topic proposal for us, contact us at bbcnasrpskom@bbc.co.uk
Bonus video: