Battling Myths and Stigma

 

Paediatric neurology holds the key to transforming the lives of countless children. From epilepsy to genetic disorders, a combination of advanced therapies and public awareness is reshaping care. However, challenges such as lack of awareness, delayed treatment, and barriers to therapy persist, demanding urgent attention and systemic action.
By Dr Sheffali Gulati

 

 

Neurological diseases in children encompass a wide range of conditions that can affect the brain, spinal cord, peripheral nerves, neuromuscular junction, or muscles. These illnesses may arise from a one-time, static injury or represent the symptoms of progressive, degenerative disorders. The com

plexity and diversity of these conditions make their diagnosis and management a significant challenge in paediatrics and neurology.
Life, in its essence, is a fascinating journey, and childhood, with its innocence and rapid growth, makes this journey even more intriguing. The first five years of a child’s life are a critical period for both physical and mental development. During this time, the body undergoes tremendous growth, and the brain matures at an astonishing pace, especially in the first two years. This early phase is marked by neural plasticity, where the brain’s ability to adapt and form new connections is at its peak. However, this same period of rapid growth also makes the brain highly vulnerable. Any form of injury or insult during this time can have devastating consequences, affecting the trajectory of the child’s development.

Neurological problems in children manifest in various ways, and the nature of these manifestations largely depends on the child’s age. This variation can be attributed to the brain’s ongoing physiological development, which influences how different conditions present. For instance, a child who experiences a perinatal stroke (a stroke occurring around the time of birth) will exhibit different symptoms and outcomes compared to a child who suffers a stroke later in life. This dynamic nature of neurological presentations underscores the importance of timely diagnosis and age-specific management.

Moreover, developmental disorders often coexist with primary neurological conditions, creating a complex interplay of symptoms and challenges. Common developmental disorders such as autism spectrum disorder (ASD), intellectual disability, and attention deficit hyperactivity disorder (ADHD) frequently occur alongside neurological conditions like stroke, cerebral palsy, epilepsy, and degenerative diseases. The overlap of these conditions complicates both diagnosis and treatment, necessitating a multidisciplinary approach to care.

Paediatric neurological disorders contribute significantly to the global burden of neurological diseases, particularly because of the extended number of years lived with disability. In India, the prevalence of paediatric neurological disorders among children aged six months to two years has been reported at an alarming rate of 27.92 per 1,000 children. This statistic highlights the urgent need for early diagnosis, intervention, and public health initiatives. The impact of these disorders extends far beyond the affected child, imposing a substantial economic burden on families and an emotional toll on caregivers. Unfortunately, this emotional exhaustion often goes unnoticed, even by the caregivers themselves. Chronic paediatric neurological disorders necessitate long-term care, which can lead to caregiver burnout, especially in the absence of adequate support systems.

Among these disorders, cerebral palsy stands out as the most common cause of childhood disability. It is a disorder of tone, posture, and movement, resulting from a one-time insult to the developing brain. The neonatal period is particularly vulnerable, as the immature brain is susceptible to a range of insults, including prematurity, ischemia, hypoxia, and infections. Neonates requiring admission to a neonatal intensive care unit (NICU) are at especially high risk. Close follow-up and developmental assessments for NICU graduates are crucial, as early intervention can significantly improve outcomes.

Early intervention includes therapies such as physical therapy, occupational therapy, speech therapy, and visual rehabilitation, all of which play a pivotal role in stimulating development and enhancing quality of life. However, in India, a significant hurdle in managing cerebral palsy is the lack of awareness among parents regarding the importance of neuro-rehabilitation. Many parents, driven by desperation, embark on a futile search for magical cures or alternative medicines, neglecting the critical non-pharmacological therapies their child needs.

This lack of awareness, combined with the emotional and financial strain faced by caregivers, often leads to “doctor shopping,” where families move from one healthcare provider to another in search of a definitive cure. Unfortunately, this process consumes valuable time, often during the crucial period when therapy could yield maximum benefits. This delay in starting appropriate interventions can have long-lasting consequences on the child’s development.

Raising public awareness about cerebral palsy is essential to changing caregivers’ attitudes towards its management. Educating parents about the benefits of structured, non-pharmacological therapies and dispelling myths about quick fixes can empower them to make informed decisions. By doing so, we can ensure that children with cerebral palsy receive the care they need to reach their full potential, and families are supported in their journey of care.

Epilepsy
Epilepsy is one of the most prevalent and misunderstood paediatric neurological disorders, surrounded by myths and weighed down by stigma. This condition is characterised by recurring seizures caused by abnormal electrical activity in the brain. Despite being treatable in a majority of cases, epilepsy continues to be misinterpreted as a psychiatric illness or, in some cultures, even a supernatural phenomenon. Such misconceptions result in delayed diagnosis and treatment, compounding the challenges for affected children and their families.

Encouragingly, nearly two-thirds of paediatric epilepsy cases can be effectively managed with one or a combination of two appropriately chosen anti-seizure medications. For the remaining one-third, classified as drug-resistant epilepsy, advanced therapeutic modalities such as vagus nerve stimulation, ketogenic diets, and even surgical interventions are now available. However, a lack of awareness about these options means that many children remain untreated or undertreated. Contrary to widespread belief, epilepsy does not always require lifetime medication. In many cases, anti-seizure drugs can be tapered off and discontinued after a child has been seizure-free for at least two years. Unfortunately, parental anxiety and fear of societal judgment often lead to secrecy, particularly in schools. Parents hesitate to disclose their child’s condition to educators, fearing it may invite discrimination or bullying, ultimately hindering the child’s academic and social development. Public awareness campaigns are essential to dispel these myths and foster an environment of understanding and acceptance for children with epilepsy.

Paediatric Stroke
While strokes are commonly associated with adults, paediatric stroke is a significant yet less common neurological disorder in children. Typically presenting as weakness or paralysis in one part of the body, it occurs when blood supply to a part of the brain is compromised, leading to ischemia and brain damage. Unlike adult strokes, which are often linked to lifestyle factors, paediatric strokes frequently result from infections, congenital heart defects, or blood disorders.

Prompt diagnosis is critical, as early intervention can significantly improve outcomes. Neurorehabilitation plays a pivotal role in the long-term recovery of children with strokes. Through a combination of physical therapy, occupational therapy, and speech therapy, many children achieve functional recovery, although some degree of disability may persist. The distinct causes and presentations of paediatric stroke underline the need for specialised protocols tailored to children’s unique needs.

Brain Infections
Brain infections in children, caused by bacteria, viruses, or other pathogens, can have diverse outcomes ranging from full recovery to severe long-term complications. These infections typically present with fever, headaches, vomiting, altered mental status, and seizures. Early recognition and immediate medical intervention are crucial to prevent lasting damage.

The severity of these infections depends on several factors, including the pathogen involved and the child’s overall health. For example, tuberculosis and certain viral infections are endemic to specific regions in India, making awareness and preventive measures particularly important in these areas. Some infections are acute, resolving with timely treatment, while others may lead to chronic conditions requiring prolonged care.

Autoimmune Disorders
Autoimmune neurological disorders in children arise when the immune system mistakenly attacks the body’s own tissues, often due to molecular mimicry—where the body’s defence mechanism cannot distinguish between foreign antigens and its cells. These conditions can affect various parts of the nervous system, including the brain (autoimmune encephalitis or demyelination), nerves, neuromuscular junction, and muscles.

Treatment typically involves immunosuppressive therapies such as steroids, intravenous immunoglobulins (IVIG), or plasma exchange. In some cases, long-term immunomodulatory treatments are necessary. Early and accurate diagnosis is vital to manage these disorders effectively and prevent irreversible damage.

Progressive Degenerative Diseases
Progressive degenerative diseases, primarily genetic in nature, represent another challenging category of paediatric neurological disorders. Conditions like neurometabolic disorders may be more prevalent among specific ethnic groups and often run in families. While therapeutic options are limited, timely diagnosis and interventions can help mitigate brain damage and improve quality of life.

Advances in genetics have enabled newborn screening for certain disorders, allowing for early intervention. Genetic counselling plays a crucial role for families with a history of these conditions, helping them make informed decisions regarding family planning. Researchers worldwide are exploring innovative treatments, including gene therapy, to provide hope for the future.

Neuromuscular Disorders
Paediatric neuromuscular disorders, such as spinal muscular atrophy (SMA) and Duchenne muscular dystrophy (DMD), have witnessed groundbreaking therapeutic advancements in recent years. Novel drugs like Nusinersen, Risdiplam, and Zolgensma for SMA, as well as eteplirsen and viltolarsen for DMD, have transformed the outlook for affected children. However, the exorbitant cost of these treatments makes them inaccessible for most families.

Supportive care remains the cornerstone of management, with multidisciplinary approaches involving physiotherapy, occupational therapy, respiratory support, and nutritional guidance. Guillain-Barré Syndrome (GBS), the most common cause of acute flaccid paralysis in children, and Myasthenia Gravis, which affects the neuromuscular junction, also demonstrate good response to therapies like IVIG and steroids.

Impact of the Pandemic
The Covid-19 pandemic exacerbated challenges in managing paediatric neurological disorders. Disruptions in routine care, teleconsultations replacing in-person visits, and limited access to rehabilitation services adversely affected children with chronic conditions. Moreover, the pandemic itself caused direct neurological complications such as encephalitis and GBS in some children.
Post-pandemic, there has been a noticeable increase in behavioural issues, particularly among children with autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD). Many children with epilepsy discontinued their medications during the pandemic, leading to a resurgence of symptoms. Resuming regular care and raising awareness about the importance of consistent therapy are vital steps in addressing these setbacks.

Paediatric neurological disorders are complex and multifaceted, requiring a nuanced and multidisciplinary approach. While some conditions are curable or manageable, others necessitate lifelong care and support. Enhancing public awareness, investing in advanced therapeutic research, and ensuring access to affordable treatment are crucial for improving the lives of affected children and their families.

(The author is a Professor, Coordinator of the DM Paediatric Neurology Program, Faculty In-charge of the Centre of Excellence & Advanced Research for Childhood Neurodevelopment Disorders, and Chief of the Child Neurology Division, Department of Paediatrics, AIIMS, New Delhi.)