In July 2020, Rowin, a lively 6-year-old from Bozeman, Montana, began experiencing frequent and uncontrollable daytime naps. This disrupted his daily routine and concerned his family. Despite multiple visits to pediatricians and specialists, a definitive diagnosis remained mysterious.
Frustrated by the lack of progress, Rowin’s family sought a referral to a sleep specialist in Bozeman. While the sleep study offered some insights, the adult-sized equipment wasn’t great for use in children and Rowin’s cataplexy episodes, or sudden loss of muscle tone, suggested a condition beyond sleep apnea.
“We went to so many appointments with so many doctors, but nothing was helping,” says Beth, Rowin’s mother. “They tried simple solutions like vitamins and sleep adjustments, but nothing worked, and things were only getting worse. After four months of getting nowhere, I was incredibly frustrated.”
Determined to find a diagnosis and treatment, the Bozeman sleep specialist recommended a specialized pediatric sleep study at an out-of-state facility. This would allow for a more precise evaluation to rule out narcolepsy or pinpoint the exact cause of his symptoms. Rowin’s family researched several children’s hospitals and ultimately chose Rady Children’s Hospital in San Diego. Their decision was influenced by the expertise of Dr. Rakesh Bhattacharjee, director of Pediatric Sleep Medicine at Rady Children’s and Associate Professor of Pediatrics at UC San Diego. During an overnight sleep study at Rady Children’s, Rowin’s abnormal sleep patterns were finally identified, confirming Beth’s suspicions of narcolepsy.
“Doctors recommended various hospitals, but I knew Rady Children’s had a great reputation,”
says Beth. “We found Dr. B, as he’s affectionately called, and that relationship has been amazing. In February 2021, a sleep study at Rady Children’s definitively diagnosed Rowin with narcolepsy. It was such a relief to finally have an answer.”
Narcolepsy is a neurological disorder characterized by excessive daytime sleepiness and sudden uncontrollable sleep episodes, often at inappropriate times. According to the National Organization for Rare Disorders, narcolepsy affects approximately 1 in 2,000 individuals with an estimated 20 to 50 cases per 100,000 people worldwide. However, the prevalence in children is uncertain, with potentially half or more cases going undiagnosed. Many researchers believe narcolepsy is often undetected or misdiagnosed.
The Center for Healthy Sleep at Rady Children’s, led by Rakesh Bhattacharjee, M.D., specializes in diagnosing and treating various sleep disorders. This includes sleep-breathing disorders like obstructive sleep apnea and central sleep apnea, as well as behavioral sleep disorders including insomnia and disorders of hypersomnia like narcolepsy.
“A significant challenge with narcolepsy, especially in children, is the high number of undiagnosed cases,” explains Dr. Bhattacharjee. “Furthermore, narcolepsy often manifests during childhood, yet the average diagnosis delay is 10 to 15 years. Early identification, like in Rowin’s case, allows for prompt treatment and facilitates advocacy efforts to ensure a child’s educational success isn’t hampered by the condition.”
Dr. Bhattacharjee carefully reviewed treatment options with Rowin’s family, explaining the various medications and their potential effects. With his guidance, Rowin began a personalized treatment plan that effectively reduced his symptoms and allowed him to regain some normalcy in his life.
“I’ve even written letters to Rowin’s schools to advocate for him,” Dr. Bhattacharjee adds, “aiming to minimize the impact of his symptoms on his academic performance. My primary goal is to achieve a swift diagnosis of narcolepsy in children to prevent any negative consequences on their educational achievements due to delayed diagnosis.”
Today, Rowin is thriving. He enjoys school and playtime with his four siblings. With renewed optimism, he’s committed to raising awareness about childhood narcolepsy. His story serves as an inspiration for others facing similar challenges to seek the support they need.
Together, Rowin and his family are on a mission to educate the public about narcolepsy, fostering empathy and understanding for those living with this condition.
To learn more about Rady Children’s Hospital’s Center for Healthy Sleep, click here.