A British boy with severe epilepsy has become the world’s first patient to trial a new device that has reduced his daytime seizures by 80%, and improved his quality of life enormously.
The neurostimulator, which is fitted to his skull, sends electrical signals deep into Oran Knowlson’s brain and has been a gamechanger, his mother told the BBC.
The eight-hour surgery was carried out in October as part of a trial at Great Ormond Street Hospital in London.
The boy, now 13, has Lennox-Gastaut syndrome, a treatment-resistant form of epilepsy which he developed when he was three, since when he has suffered varying daily seizures, ranging from two dozen to hundreds.
At times he would lose consciousness, or stop breathing and require emergency medication to resuscitate him, said his mother, Justine Knowlson.
Her son also has autism and ADHD, but she said his epilepsy was by far the biggest hurdle.
Oran is part of the CADET project, a series of trials assessing the safety and effectiveness of deep brain stimulation for severe epilepsy: the partnership involves Great Ormond Street Hospital, University College London, King’s College Hospital and the University of Oxford.
The Picostim neurotransmitter is made by UK company Amber Therapeutics, and has also been used to treat patients with Parkinson’s disease.
Epilepsy seizures are triggered by abnormal bursts of electrical activity in the brain that the device, which emits a constant pulse of current, aims to block or disrupt.
The surgical team, led by consultant paediatric neurosurgeon Martin Tisdall, inserted two electrodes deep into Oran’s brain until they reached the thalamus, a key relay station for neuronal information.
The margin of error for the lead placement was less than a millimetre.
The ends of the leads were connected to the neurostimulator, a 3.5cm square and 0.6cm thick device which was placed in a gap in Oran’s skull where the bone had been removed. The neurostimulator was then screwed into the surrounding skull to anchor it in place.
Deep brain stimulation has been tried before for childhood epilepsy, but until now neurostimulators were placed in the chest, with wires running up to the brain.
“This study will hopefully allow us to identify whether deep brain stimulation is an effective treatment for this severe type of epilepsy, and 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,” said Tisdall.
“We hope this will reduce the potential complications.”
That includes reducing the risk of infections after the surgery, and the device failing.
Oran was given a month to recover from the operation before the neurostimulator was turned on. When it is on, he cannot feel it. And he can recharge the device daily via wireless headphones, while doing other things, like watching TV.
Now, seven months since the surgery, his mother said there had a massive improvement in his epilepsy: “He is more alert and with no drop seizures during the day. His night-time seizures are also shorter and less severe.”
As part of the trial, three more children with Lennox-Gastaut syndrome will be fitted with the deep brain neurostimulator.
Real time
In the future, the team plans to make the neurostimulator respond in real time to changes in his brain activity, in an attempt to block seizures as they are about to happen.
Another type of skull-mounted neurostimulator has been used in the United States to treat epilepsy.
BBC article – World first epilepsy device fitted in boy’s skull (Open access)
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