Summary: A revolutionary implantable device significantly reduced the frequency and severity of seizures in children with severe epilepsy, according to a new UK clinical trial.
The rechargeable device, attached to the skull, delivers constant electrical stimulation to the brain, allowing patients like Oran to experience dramatic improvements in their quality of life.
This trial, known as the CADET pilot, is the first to measure this treatment for pediatric epilepsy and shows promise for broader applications. Further research will expand to more patients, with the aim of setting a new standard in epilepsy treatment.
Highlights:
- Reduction of seizures: The device significantly reduced the frequency and severity of seizures.
- Innovative design: Mounted on the skull and rechargeable, it avoids frequent surgical interventions.
- Clinical test: The first British trial to test this type of treatment for children with epilepsy.
Source: UCL
Oran, who had suffered from severe epileptic seizures for eight years and often needed resuscitation, was the first child in the UK to have the device implanted at Great Ormond Street Hospital in October 2023, when he was 12 years old.
Eight months later, her seizures have significantly decreased in frequency and severity thanks to the device.
The rechargeable device is mounted on the skull and attached to electrodes located deep in the brain to reduce seizure activity. This is the first UK clinical trial measuring this type of treatment for children with epilepsy.
The CADET (Children’s Adaptive Deep brain stimulation for Epilepsy Trial) pilot project will now recruit three additional patients with Lennox-Gastaut syndrome, funded by the Royal Academy of Engineering, before 22 patients take part in the full trial, funded by GOSH Charity and LifeArc. The study is sponsored by UCL.
Martin Tisdall, (Honorary Associate Professor at UCL and Consultant Pediatric Neurosurgeon at GOSH), said: “Every day we see the life-threatening and life-limiting impacts of uncontrollable epilepsy. This can make school, hobbies, or even just watching a favorite TV show completely impossible.
“For Oran and his family, epilepsy completely changed their lives and so seeing him ride a horse and regain his independence is absolutely astonishing. We couldn’t be happier to be part of their journey.
“Deep brain stimulation brings us closer than ever to stopping seizures in patients who have very limited effective treatment options. We are excited to build an evidence base to demonstrate the ability of deep brain stimulation to treat pediatric epilepsy and hope that in the years to come it will be a standard treatment that we can offer.
The history of Oran
Oran’s seizures began two weeks after his third birthday and until the trial he had not had a single day without a seizure.
Many of his family members all have a mutation in the SCNIB gene and have all suffered from seizures and epilepsy, but all now have their seizures under control.
Unfortunately, Oran’s epilepsy worsened, often causing him to stop breathing and require resuscitation. This meant Oran needed 24-hour care, as seizures could occur at any time of the day, and he was at significantly increased risk of sudden unexpected death from epilepsy (SUDEP).
Justine, Oran’s mother, said: “Before the crises started, Oran was meeting all its goals, but as the crises became more severe, we lost more and more of Oran. From a happy, energetic three-year-old, he struggled to engage with the world due to his medications and seizures – but he still has his sense of humor.
“We’ve tried everything, but this is the first real chance we’ve been given in years, there hasn’t been a ‘what next’ until now.
“Unless someone takes the first step in a trial like this, there will never be any better and there must be better for our family.”
Oran underwent surgery in October 2023 to insert the device and once he recovered from the procedure, the device was “turned on”, delivering constant electrical stimulation to Oran’s brain. Since then, the life of Oran and his family has completely changed.
Justine, the mother from Oran, said: “We have been under tension since December and we have seen a great improvement, the attacks have reduced and are less severe. This is great, but the improvement in quality of life has been invaluable to Oran.
“He is much more talkative, he is more engaged. He’s 13 and I definitely have a teenager – he’s happy to tell me no. But it adds to his quality of life, when he can express himself better.
“The team really supports you. We have never felt alone since last August (when we participated in the trial). We felt like we were part of the team, just like Oran.
“The future looks bright, something I wouldn’t have dreamed of saying six months ago. For Oran, having hope is a source of enthusiasm. This makes the future brighter and even more attainable. I’m really happy that Oran can experience this.
The CADET pilot and test
Deep brain stimulation (DBS) is a surgical treatment that involves inserting a small device that stimulates specific parts of the brain.
Unlike other DBS devices which are mounted on the chest with wires running up from the neck to the brain, this device is mounted on the skull, meaning the leads are less likely to break or erode as the child grows up.
This device is also rechargeable via wearable headphones, which can be used while watching a video or interacting with a tablet. This also means that it does not require surgery to replace it every three to five years.
Professor Tim Denison, Chair of Emerging Technologies at the University of Oxford and the Royal Academy of Engineering, said: “Our mission is to design innovative research systems to explore the treatment of incurable health problems such as pediatric epilepsy. Oran is the first child in the world to receive this device and we are extremely happy that it has had such a positive benefit for him and his family.
The device targets the thalamus, which is a hub of electrical signals in the brain. It is hoped that the device will block electrical pathways and thus prevent seizures from spreading. The device also has parameters for optimizing seizure patterns, which, although not used in this trial, could be used in the future for patients with LGS.
Funding: The CADET Pilot is funded by the Royal Academy of Engineering and sponsored by UCL. This is a collaboration between UCL, GOSH, King’s College London, the University of Oxford and a UK-based company: Amber Therapeutics.
The second phase of the trial will be jointly funded by GOSH Charity and LifeArc Translational Research Accelerator Grants.
About this research news on deep brain stimulation and epilepsy
Author: Poppy Tombs
Source: UCL
Contact: Poppy tombs – UCL
Picture: Image is credited to Neuroscience News