Off-label Sodium Oxybate in Childhood Narcolepsy: A Comprehensive Report

Narcolepsy is a sleep disorder that can manifest in childhood or adolescence by causing excessive sleepiness, hallucinations, sleep attacks, or cataplexy. There is often a significant delay in diagnosis with the mean time being 15 years from the onset of symptoms, which may lead to further exacerbations and a high comorbidity burden. Although narcolepsy is predominantly associated with loss of hypocretin (orexin), the role of genetics is poorly understood and, therefore, is complementary to the diagnosis but not confirmatory. We present the case of a child who was misdiagnosed as suffering from schizophrenia only to later uncover narcolepsy with cataplexy. Even though she did not meet strict criteria for narcolepsy type 1, her history and objective data were consistent enough to make an official diagnosis. In addition, her clinical response to treatment was very positive, further supporting narcolepsy as the most likely underlying condition. This presentation highlights the importance of continued education and research to reduce the risk of delay in diagnosis or misdiagnosis.