Deep brain stimulation (DBS) is a cutting-edge neurosurgical treatment that may help improve disability and quality of life in selected children with cerebral palsy due to genetic conditions or birth injury.
Deep brain stimulation involves surgical placement of a device called a neurostimulator (commonly referred to as a “brain pacemaker”). The device sends electrical impulses, through electrodes implanted in specific areas of the brain to treat movement disorders. The Kids Neuroscience Centre research team has multidisciplinary expertise to examine suitability for DBS and offers this in a safe environment to eligible children.
At 6 months of age Al Graham was diagnosed with a rare movement disorder called dyskinetic cerebral palsy, years later found to be related to the GNAO1 gene. Over the years Al’s involuntary movements became increasingly worse, causing him to be hospitalised for weeks at a time. His future was uncertain. At 15 years old Al, after a prolonged dystonic storm and intensive care stay, Al underwent DBS.
Al says, “DBS has immeasurably benefited my life. I was just using up all my energy and wasting away. It's good to be happy and healthy again”.
Al has now started an online business and is looking forward to traveling overseas in the future. He has not had a single emergency visit back to the hospital since! Watch the full video of Al’s journey.
Studying family satisfaction and outcomes after DBS in children is part of a research project led by Dr Shekeeb Mohammad from Kids Neuroscience Centre and Dr Simon Paget from Kids Rehab. The project is generously funded by the Cerebral Palsy Alliance.
The KNC research team contributed to development of a review on the role of DBS in children and this is now available on the public domain https://www.saxinstitute.org.au/publications/evidence-check-library/paediatric-deep-brain-stimulation/
More research is needed to study factors that determine differences of outcomes from DBS in different groups, particularly cerebral palsy. Further funding is required to develop a statewide model to support individuals with DBS devices including electronic resourcing and support systems via a statewide nurse.
Dr Shekeeb Mohammad, Prof Russell Dale (Kids Neuroscience Centre), Dr Simon Paget, Kirsty Stewart, Jenny Lewis (Kids Rehab) and Dr Neil Mahant (Neurology CHW) are the investigators and part of the main DBS team. A/Prof Brian Owler is the paediatric neurosurgeon who is skilled in DBS implantation.
The project is generously funded by the Cerebral Palsy Alliance.