Improving the lives of children with movement disorders – development of Deep Brain Stimulation (DBS)
At least 8,000 children and young people in the UK suffer from dystonia – a movement disorder which severely affects their quality of life. It is caused by incorrect signals from the brain being sent to the rest of the body and causes uncontrollable, sometimes painful, muscle spasms. It can cause repetitive movements and parts of the may body to be twisted into unusual positions. In some cases it can be so severe it becomes life-threatening.
Children with dystonia can find all aspects of life difficult including walking, talking, speaking and eating. For some children ongoing spasms require heavy sedation with long hospital stays. The condition can also affect growth and development of the muscles and bones, and lead to deformity.
Action Medical Research has a history of supporting research to help people with dystonia. In the past, we funded work by Professor John Rothwell to better understand the condition and investigate ways to treat it, including a surgical treatment called deep brain stimulation (DBS). This method sees electrical wires inserted under the skin into specific areas of the brain and electrical pulses are delivered to control the spasms.
More recently, in 2012, Action funded work by Dr Jean-Pierre Lin, a consultant paediatric neurologist at the Evelina Children’s Hospital in London. He sought to improve how DBS is used to treat children suffering from dystonia, and his research has led to new insights into which areas of the brain should be targeted by the treatment. It has helped doctors to identify children who stand to benefit most from this treatment option, and to ensure that when surgery is done, it is as effective as possible.
These techniques are now being used to help dramatically improve children’s movement and quality of life. More than 100 children have already benefitted, with some even able to progress from being unable to walk to walking independently within two to four years of starting the treatment.
It is hoped the technique will now be tested in clinical trials, following which Dr Lin estimates that several hundred children in the UK could benefit each year.