Infant Narcolepsy: Essential Facts for Parents to Understand
Narcolepsy, a neurological disorder characterized by excessive daytime sleepiness and sudden, irresistible episodes of sleep, has long been shrouded in mystery. However, a growing body of research is shedding light on the condition, challenging the common belief that one can be "born with narcolepsy."
While there is no cure for narcolepsy, treatments and lifestyle changes can help manage the symptoms effectively. Doctors typically recommend a combination of wake-promoting agents, antidepressants, sedatives, and lifestyle modifications such as maintaining a regular sleep schedule, taking short naps, exercising daily, avoiding heavy meals and caffeine before bed, and practicing good sleep hygiene.
A recent study has found that adolescents and teens with narcolepsy often face difficulties in focusing, memory, school performance, and social relationships, among other challenges [1]. Early presentations of the disorder in children can lead to underdiagnosis and a delay in receiving a diagnosis, as doctors may initially misdiagnose them with seizures, attention deficit hyperactivity disorder, other behavioral disorders, depression, or schizophrenia [2].
To diagnose narcolepsy in a child, doctors will ask about their medical and family history, perform a physical exam, and recommend several tests, including blood tests, polysomnogram sleep tests, multiple sleep latency tests, spinal fluid tests, and sleep journals.
One of the approved treatments for excessive daytime sleepiness and cataplexy in pediatric patients aged 7 to 17 years is Xyrem, a sedative approved by the Food and Drug Administration (FDA) [3].
It is essential to understand that genetics alone do not cause narcolepsy. Instead, they confer susceptibility. The disorder usually results from other factors triggering the condition in genetically predisposed individuals [1]. In humans, narcolepsy type 1 (NT1) involves the loss of neurons producing orexin (hypocretin), likely due to an autoimmune process influenced by genetics and environment, not present at birth but developing afterward [1].
While some animals, such as Doberman dogs, can inherit narcolepsy in a clear autosomal recessive pattern, this pattern has no direct parallel to human narcolepsy [2]. This finding underscores the complexity of the disorder in humans, emphasizing that it is generally considered a chronic neurological disorder with onset typically in adolescence or young adulthood, not a congenital condition present at birth [1][3].
Education is crucial for parents, caregivers, teachers, coaches, and family members to understand the condition and how it may affect the child's behavior and overall functioning. As more research is conducted, our understanding of narcolepsy continues to grow, challenging the myth that one can be born with the disorder. Instead, it appears that a person may have a genetic predisposition for narcolepsy, but the condition typically manifests after birth due to an interplay of genetics and environmental factors.
References:
[1] Mignot, E., Lin, L. M., & Mieda, T. (2011). Narcolepsy. The Lancet Neurology, 10(11), 1021-1032.
[2] Lin, L. M., Mieda, T., & Mignot, E. (2013). Narcolepsy. The New England Journal of Medicine, 368(11), 1049-1060.
[3] National Institute of Neurological Disorders and Stroke. (2021). Narcolepsy Fact Sheet. Retrieved from https://www.ninds.nih.gov/Disorders/All-Disorders/Narcolepsy-Information-Page
- Despite the common belief, narcolepsy is not typically a congenital disorder; instead, it generally manifests after birth due to an interplay of genetics and environmental factors.
- Xyrem, a sedative approved by the FDA, is one of the approved treatments for excessive daytime sleepiness and cataplexy in pediatric patients with narcolepsy.
- In managing narcolepsy, medical professionals often recommend a comprehensive approach that includes lifestyle changes, medications like antidepressants and wake-promoting agents, and diagnosing the condition using various tests, such as sleep studies and spinal fluid tests.
