Specialty care for children with complex neurologic conditions can be a lifeline for families

By Dr. David Toupin
University of Kentucky

As a neurologist specializing in the care of children with complex neurologic diseases, I’ve seen firsthand the profound impact that compassionate and personalized care can have on the lives of children and their families. Whether conditions have exciting new treatments—as in Spinal Muscular Atrophy (SMA) or Duchenne Muscular Dystrophy (DMD)—or in situations where treatments have yet to be developed, a personalized and multidisciplinary approach allows for optimal care.

Children with complex neurologic diseases often face a range of challenges. Challenges may be related to health conditions, such as breathing difficulties, scoliosis, or seizures; developmental problems, such as motor or speech delays; or psychosocial problems, relating to school, community, or home functioning. Early intervention by a team of specialists—physicians, therapists, genetic counselors, social workers—are crucial. A collaborative approach ensures that every aspect of the child’s health and well-being is addressed, improving their quality of life.

Specialty care allows for the use of advanced diagnostic tools and treatment options tailored to each child’s unique needs. For example, recent breakthroughs in gene therapy for SMA and DMD have revolutionized care, offering hope to families who previously had limited options. These treatments, however, require careful coordination among multiple specialists who understand the nuances of these diseases.

Moreover, multidisciplinary, specialized care provides invaluable support to families. The journey of caring for a child with a complex neurologic disease is fraught with emotional, physical, and financial challenges. Specialists not only provide medical care but also connect families with resources and support networks, helping them navigate the complexities of their child’s condition.

Specialized care is not just about treating a condition; it’s about offering a comprehensive, compassionate approach that considers the whole child and their family. For all children with complex disorders, specialized care is essential, providing them the best chance to thrive, both now, and in the years ahead.

Dr. David Neil Toupin, M.D., is a child neurologist with Kentucky Children’s Hospital and Kentucky Neuroscience Institute.

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