When Seth was 5 years old and fell asleep while belting out one of his favorite Michael Jackson songs in the car, his parents thought he was just exhausted.
A few weeks later, when he fell asleep mid-bite during lunch, they began to get worried. He was sleeping a lot more, and during the day he would sleep through all of his classes at school. His performance was plummeting, and so was his self-esteem.
Seth was labeled “lazy” by those around him, which his mother, Ana, knew simply wasn’t true. She took Seth to his pediatrician to find out what was going on. The doctor recommended focusing on diet and exercise , but the new routine Seth’s mom implemented didn’t seem to help . At a follow-up visit, Seth’s pediatrician referred them to Children’s Healthcare of Atlanta. “The very first day at Children’s literally changed all of our lives,” Ana said.
Seth saw Roberta Leu, M.D., at the Children’s Sleep Center. After hearing his story, she told the family that she suspected Seth had narcolepsy and ordered a two-part sleep study. He participated in an overnight sleep study at the center, where he was hooked up to different machines that looked at his sleep and breathing patterns. Though he was scared at first, the process was actually easy and comfortable.
In the hallway, everyone high-fived him and asked him about his wires. “Seth felt like a celebrity,” Ana said. “You could feel the warmth from each and every person who worked there.”
Seth felt so comfortable at Children’s that he didn’t want to leave. “He asked if we could stay another night,” his mother said.
The sleep study confirmed the diagnosis of narcolepsy without cataplexy. Ana was relieved that a doctor was finally seeing what she had observed for the past year and a half.
Dr. Leu helped Seth and his family with the next steps. She wrote a letter to his school explaining what narcolepsy is, how symptoms can be misunderstood and simple ways the school could help him perform to the best of his abilities. These components were incorporated into an individualized education plan (IEP). She helped Seth adjust to his new medication and told the family how they could help manage his narcolepsy.
“No one was listening to us before we came to Children’s,” Ana said. “Dr. Leu said they were going to find out what was happening with my son, and that’s exactly what they did. They didn’t give up on us.”