Early Detection of Sleep Disorder Helps High Schooler
Madison Crawford is learning how to manage narcolepsy with the help of Kathryn Esch, F.N.P.-C., M.S.N., MidMichigan Health’s sleep medicine program.
Many know from experience that a rough night’s sleep can have a big impact on the next day. For individuals with sleep disorders, securing quality sleep is an ongoing challenge. Many suffer needlessly simply because they go undiagnosed or are unaware that a solution exists. For individuals under the age of 18, obtaining a proper diagnosis and tools to work through a given condition are paramount for long-term quality of life.
Kathryn Esch, F.N.P.-C., M.S.N., works with patients of all ages in the sleep clinics of MidMichigan Health. Esch says MidMichigan Health is working diligently to expand its reach in an effort to improve the health and wellbeing of as many residents as possible, including children and teens in the region, through sleep medicine.
“Most of the younger patients we see are college-aged,” said Esch. “Often, sleep disorders go unrecognized or are mislabeled as depression or normal teen lethargy at younger ages. I was so happy to connect with Maddi so we could do some real work to help her with her very real sleep disorder.”
Esch is referring to patient Madison Crawford, a high school student diagnosed with narcolepsy and cataplexy at age 13. Narcolepsy is rare and causes excessive and uncontrollable daytime sleepiness. It is sometimes accompanied by cataplexy, an involuntary loss of muscle tone triggered by strong emotions such as laughter, anger or excitement.
“Identifying a condition and learning tools to manage symptoms are key to reducing fear and taking ownership of one’s health, especially at a young age,” said Esch. “Maddi’s conditions are incurable, and I’m proud of her for working so hard to manage them.”
Madison’s parents, Greg and Dawn Crawford, are happy to have connected with MidMichigan’s sleep medicine program and professionals. “Maddi was diagnosed elsewhere, but my wife and I didn’t feel she was getting personal or individualized care,” he said. “Katie (Esch) and Maddi have regular phone visits to check in, and Maddi has learned some good techniques to cope with her condition. She feels comfortable with Katie.”
Before diagnosis, Maddi’s parents knew that something was amiss but couldn’t put their finger on it. Not only was she complaining that she couldn’t fall sleep and was tired most days, they also noticed a change in her personality. “Maddi just wasn’t herself,” said Crawford. “She was always sleepy and saying she hadn’t gotten a good night’s rest,” said Mr. Crawford. “We knew there was something going on beyond the norm and are glad we pursued it.”
Once Maddi’s received her diagnoses, a treatment plan was top priority. The family took a unified approach to finding professionals such as Esch dedicated to Maddi’s individual needs. They also communicated openly with Maddi’s school. Once narcolepsy was identified, Maddi’s teachers at Bullock Creek quickly recognized some symptoms they had seen in class. What might have been labeled disinterest, daydreaming or indifference where actually cataplexic and sleep episodes beyond her control. “Sharing information about Maddi’s condition and the tactics she needs to employ to manage symptoms is so important to her being successful,” said Mr. Crawford. “Our expectations of her haven’t changed, it’s just that the road to achieving her goals looks a little different now. We have open discussions, do a lot of research and stay on a positive, proactive path so she can live a full and fulfilling life.”
Gary Rapelje, R.R.T., M.B.A., C.P.H.Q., director of respiratory care and sleep medicine for MidMichigan Health, is excited about reaching more people who need help. “Madison is a perfect example of a person who can benefit from early detection of a sleep disorder,” said Rapelje. “Across the region, we are working with all providers to identify patients with any type of sleep disturbance and connect them with our sleep providers. We have also developed a free assessment tool that is easily accessible on our website.”
Madison is still relatively early in her diagnosis, and experiences gains and setbacks. She stays connected with Esch, and is working with pediatric neurologists and other specialists at Michigan Medicine in Ann Arbor, a partner of MidMichigan Health. A combination of medication and behavior modification, such as strategic napping, helps control symptoms. It is a coordinated effort. The Crawfords are also making arrangements for a service dog that can alert Maddi when she unknowingly experiences narcolepsy symptoms and detect issues that arise from her newest diagnosis of functional neurological disorder.
“What I would say to people is don’t delay in seeking treatment,” said Mr. Crawford. “We know our loved ones best. If you feel something’s going on, don’t let stigma or finances or anything get in the way. Find help that fits your needs and move forward with it.”
Esch and the sleep medicine team individualize treatments for patients, which can change over time. To learn more about sleep disorders and treatment and to watch a video tour of a MidMichigan Health sleep lab, visit www.midmichigan.org/sleep. To take the free sleep assessment, visit www.midmichigan.org/sleepapnea.