In a world-first trial, a new epilepsy device was implanted in the skull of a 12-year-old boy from Somerset called Oran Knowlson. The device, a neurostimulator, sends electrical signals to his brain, reducing his daily seizures by 80%. Oran suffers from Lennox-Gastaut syndrome, a severe form of epilepsy that began when he was three years old.
His mother, Justine, said: BBC Oran has improved dramatically and reports that he is “a lot happier” and ultimately “his quality of life has improved a lot.”
Before that, Oran’s epilepsy dominated his life. “It took away his whole childhood,” Justine said last year. The seizures, which ranged from dozens to hundreds per day, included violent shaking, falling and even passing out, requiring emergency resuscitation.
Oran has autism and ADHD, but Justine says his epilepsy is by far the biggest obstacle: “I had a very intelligent three-year-old, and within a few months of starting his seizures he started to deteriorate rapidly, and he lost a lot of skills.”
Oran’s treatment is part of a research project (CADET) testing deep brain stimulation for severe epilepsy. The project involves several hospitals (Great Ormond Street, UCL, King’s College and Oxford) and uses a neurotransmitter-containing device manufactured by Amber Therapeutics (UK).
Epileptic seizures result from abnormal bursts of electrical activity in the brain.
This device emits a continuous electrical current, which is intended to block or interrupt these abnormal signals.
Justine expressed her hope before the operation: “I want him to come out of the fog of seizures and rediscover himself. I want my son back.”
This surgery, which will last about eight hours, will be done in October 2023.
Led by consultant paediatric neurosurgeon Martin Tisdall, the team inserted two electrodes into Oran’s brain, precisely reaching the thalamus – a crucial relay station for neuronal information.
The margin of error in placing the electrodes was less than one millimeter.
The ends of the electrodes were connected to a neurostimulator, a device 3.5 cm square and 0.6 cm thick, which was implanted into Oran’s skull at the site from which the bone had been removed.
The neurostimulator was then secured to the surrounding skull with screws to hold it in place.
Previously, deep brain stimulation for childhood epilepsy involved implanting a neurostimulator in the chest, connected to the brain by wires extending upward. However, this approach is now evolving.
Martin Tisdall told the BBC: “This study will hopefully help us find out whether deep brain stimulation is an effective treatment for this severe form of epilepsy and also lead to the development of a new type of device that is particularly useful for children because it is implanted in the skull rather than the chest.
“We hope this will reduce potential complications.”
Steps are taken postoperatively to minimise the risk of infection and to ensure the long-term functionality of the device.
A month after recovering from surgery, Oran’s neurostimulator was activated. Fortunately, it is completely painless and can be recharged wirelessly via headphones, allowing him to enjoy activities like watching TV without any disruption to his daily life.
We caught up with Oran and his family seven months after the operation to see how they are recovering. Justin told us that Oran’s epilepsy has improved a lot, “He is much more alert and doesn’t have any seizures during the day.”
His nighttime seizures are also “shorter and less severe.”
“I’m definitely bringing him back slowly,” she said.
Martin Tisdall said: “We are delighted that Oran and his family have benefitted so greatly from the treatment and that it has dramatically improved his seizures and quality of life.”
Oran is now taking horse riding lessons.
As part of the trial, three more children with Lennox-Gastau syndrome will be fitted with a deep brain neurostimulator.
Currently, Oran receives constant electrical stimulation from his device.
The Picostim neurotransmitter is made by UK company Amber Therapeutics. It sits under the skull and sends electrical signals deep into the brain, reducing daytime seizures. The CADET pilot will now enroll three additional patients with Lennox-Gastaut syndrome, leaving 22 patients to be recruited to take part in the full trial.