In September 2017, we celebrated 10 years since the introduction of deep brain stimulation (DBS) as a treatment for patients at Cook Children’s. DBS received a humanitarian device approval from the FDA in 2003 for treatment of dystonia in patients as young as 7 years of age and Director of the Movement Disorders program, Warren Marks, M.D., first proposed the idea of doing DBS in 2005 in response to a patient’s needs.
Two years of study and planning ensued, and in September 2007, Cook Children’s performed its first implant. MaryAnn Reed, clinical nurse specialist, was instrumental in ensuring we had adequate educational support for our patients and families and remains actively engaged today. We were the first independent children’s hospital in the United States to offer DBS, and remain the most experienced program in the United States. More than 100 patients from across the country and around the world have benefited from our program.
Initially performed with patients conscious but sedated, John Honeycutt, M.D., director of Stereotactic Neurosurgery, led our transition to intraoperative MRI image-guided surgery in 2011 and is the most experienced pediatric neurosurgeon using the Clearpoint system. Our team serves as a resource to other programs that are being developed worldwide.
What is deep brain stimulation?
In simple terms, DBS is a pacemaker for the brain delivering a small current of electricity to carefully targeted areas of the brain responsible for managing movement. Dr. Honeycutt has pioneered the use of the intraoperative MRI to provide highly accurate targeting without the need to do invasive electrical monitoring.
How does DBS work?
The electrical current from DBS both disrupts abnormal brain signals and helps the brain establish new pathways of information over time. Similar to medication, the dose of DBS can be individualized for the patient’s needs to achieve the best outcome. Stimulation parameters are programmed with a small computer placed on the skin over the implanted pacemaker located in the chest area. Warren Marks, M.D., Fernando Acosta, M.D., and Stephanie Acord, M.D., are the movement disorders neurologists responsible for patient programming.
Who might benefit from DBS?
DBS was first approved for essential tremor and Parkinson’s disease in the late 1990s. In children, however, dystonia is our primary indication. DBS has also been used in other movement disorders in adults and children.
What is dystonia?
Dystonia is a movement disorder that results in uncontrolled twisting and writhing movements. Abnormal brain signals cause muscles to work against each other, making even the simplest of activities such as walking, eating and talking difficult or even impossible. There are many causes of dystonia, and cognition is often fully preserved. One of the most common causes of dystonia in children is cerebral palsy, and we have been leaders in the use of DBS for these patients.
How do we evaluate patients?
Patients being considered for DBS are evaluated by our multidisciplinary clinical team. In addition to the movement disorder neurologist, the team includes a social worker, physical therapist, orthotist, nutritionist and clinical nurse specialist who are all involved before the child is referred to neurosurgery. The evaluation and patient education occurs over time. The importance of managing patient and family expectations cannot be overstated. DBS is not a cure. While “miracles” do occur, more often we are chasing smaller gains in order to improve function.
To refer a patient for DBS or other movement disorders at Cook Children’s, call 682-885-2500.
Sharing our expertise:
We are recognized worldwide as a leader in pediatric DBS. Drs. Marks and Honeycutt have made numerous presentations at national and international meetings. We host visitors from other programs. We are one of the organizing centers behind PEDiDBS, an international registry of children undergoing DBS at centers across the world in order to facilitate data sharing and improve patient outcomes.
Koy A, Sanger T, Lin JP, Marks W, Mink J. Advances in management of movement disorders in children. The Lancet Neurology. 2016;15(10):1004-1004
Marks W, Honeycutt J, Reed M, Acosta FA. Pediatric Deep Brain Stimulation. Seminars in Pediatric Neurology, 2009;16(2):90-98.
Marks WA, Bailey L. Sanger T. PEDiDBS: The Pediatric International Deep Brain Stimulation Registry Project. European J of Ped Neurology 2017;21(1):218-222
Marks WA, Honeycutt J, Acosta Jr FA, et al. Dystonia due to Cerebral Palsy Responds to Deep Brain Stimulation of the Globus Pallidus Internus. Movement Disorders, 2011; 26(90:1748-1751;
Marks WA, Bailey L, Reed MA, Pomykal A, Mercer M, Acosta Jr F, Honeycutt J. Pallidal stimulation in children: comparison between cerebral palsy and Dyt-1 related dystonia. Journ Child Neurol 2013;28:840-848;
Koy A, Hellmich M, Pauls KA, Marks WA, Lin JP, Fricke O, Timmerman L. Effects of deep brain stimulation in dyskinetic cerebral palsy: a meta-analysis. Mov Dis 2013;28:647-654.