By Dr David Toupin
University of Kentucky
As a neurologist specializing in the treatment of children with complex neurological conditions, I have seen firsthand the profound impact that compassionate and personalized care can have on the lives of children and their families. Whether diseases have exciting new treatment options—as with spinal muscular atrophy (SMA) or Duchenne muscular dystrophy (DMD)—or situations where treatments have not yet been developed, a personalized and multidisciplinary approach enables optimal care.
Children with complex neurological conditions often face a range of challenges. These may be related to health problems such as breathing difficulties, scoliosis or seizures; to developmental problems such as motor or language delays; or to psychosocial problems related to the school, community or home situation. Early interventions by a team of specialists – doctors, therapists, genetic counsellors, social workers – are crucial. A collaborative approach ensures that every aspect of the child’s health and wellbeing is addressed, improving their quality of life.
Specialized care can utilize modern diagnostic tools and treatment options tailored to each child’s individual needs. For example, recent breakthroughs in gene therapy for SMA and DMD have revolutionized care and given hope to families who previously had limited options. However, these treatments require careful coordination between multiple specialists who understand the nuances of these diseases.
In addition, multidisciplinary, specialized care provides invaluable support to families. Caring for a child with a complex neurological condition presents emotional, physical and financial challenges. Specialists not only provide medical care, but also connect families with resources and support networks and help them navigate the complexity of their child’s condition.
Specialized care is not just about treating a condition; it is about providing a comprehensive, compassionate approach that considers the child and family as a whole. For all children with complex disorders, specialty care is essential to give them the best chance to thrive now and in the years to come.
Dr. David Neil Toupin, MD, is a pediatric neurologist at Kentucky Children’s Hospital and Kentucky Neuroscience Institute.