Wake-Up Call

Tiana Jones wiredLast spring, 11-year-old Tiana Jones was a straight-A student in her Elizabeth City middle school when she inexplicably began falling asleep in class.

Severe drowsiness would come upon her suddenly and uncontrollably. She’d drift quickly into a deep slumber at her desk, usually until a classmate jostled her awake.

The same thing happened on car rides and when Tiana was doing homework in her room. She had strange spells of déjà vu, thinking she’d already taken notes in class or finished her homework but found herself staring at a blank piece of paper instead.

Despite her sleepiness during the day, Tiana couldn’t sleep at night. She saw “creepy monsters” beside her bed and sometimes never drifted off at all. “I was just always so tired,” she says.

Tiana’s mother, Sh’Rhonda, initially thought her daughter might be going through some preteen hormone changes or suffering from depression. Tiana was also having severe headaches and was seeing Dr. Ingrid Loma-Miller, a pediatric neurologist at CHKD, for migraines. Upon learning of the sleep issues, Dr. Loma-Miller referred Tiana to the center for pediatric sleep medicine at Children’s Hospital of The King’s Daughters.

Dr. Michael Strunc, a CHKD pediatric neurologist who is board certified in pediatric sleep medicine, ordered a two-day sleep study for Tiana. With access to state-of-the-art equipment, CHKD doctors can diagnose problems through a multiple sleep latency test, or MSLT, which includes an overnight sleep study and subsequent daytime nap monitoring.

Tiana arrived for her sleep study in the evening. Technicians applied electronic sensors to Tiana’s head and chest to record her sleep stages, respiratory function, and brainwave and motor activity. The overnight monitoring took place from 9 p.m. to 6 a.m. the next morning, but Tiana was free to get up to use the bathroom or get a drink as needed. Sh’Rhonda wasn’t far from her daughter during the testing. She stayed in the comfortable guest sleep room nearby, designed so parents can stay with their children.

In the morning, Tiana had an early breakfast and stayed awake for two hours before taking the first of five attempted naps beginning at 8 a.m. Every two hours, Tiana would try to sleep for 20 minutes.

After Tiana’s sleep study results were analyzed, the family returned to CHKD, where Dr. Strunc gave them an unexpected diagnosis: Tiana has narcolepsy, a chronic, neurological sleep disorder marked by low levels of a brain chemical that helps promote wakefulness.

Most children with narcolepsy can be treated effectively with medication. Dr. Strunc prescribed a medication for Tiana at the start of the summer, and she experienced immediate improvements. She no longer fell asleep during the day and got better sleep during the night. Sh’Rhonda believes the early diagnosis and treatment spared her child – an aspiring fashion designer – many struggles in her schooling, social life and extracurricular activities, which include cheerleading and dance.

“She’s had an awesome response to the medicine,” Sh’Ronda says. “If we hadn’t figured out what it was, her grades probably would have started slipping, and that would have put her into a deep depression because this is a kid who doesn’t like getting even one B. She could have easily gotten hurt somewhere, too, if she fell into a deep sleep at the wrong time. It’s scary to even think about that.”

CHKD has always had doctors from multiple specialties to help children such as Tiana with sleep disorders. Now, with growing recognition of the frequency and impact of such disorders in young patients, the hospital has expanded its program, with plans to add a comprehensive sleep center at the hospital campus and the CHKD Health Center at Oakbrooke. Additions include sleep laboratory rooms, exam and consult rooms, additional diagnostic equipment, more medical specialists and greater research capabilities.

“Our goal is to build an even more comprehensive sleep center,” says Dr. Strunc. “We are starting to see more patients and handle everything from the most mundane, common sleep problems to very complicated, rare disorders. We can make a huge difference in the lives of these kids and their entire families.”

The center’s staff currently includes three other board-certified pediatric sleep medicine physicians: Dr. Albert Ho, also a pediatric neurologist; Dr. Cristina Baldassari, a pediatric ear, nose and throat specialist; and Dr. Jenny Wiebke, a pediatric pulmonologist. “We can have the greatest impact when we work collaboratively and have a multi-disciplinary approach,” Strunc says. 

Dr. Strunc and his team worked in concert with Dr. Loma-Miller to design the treatment plan for Tiana. “Coordinating with pulmonology, allergy, neurology and ENT is a routine part of what sleep medicine does for patients,” Dr. Strunc says.

The sleep center at Oakbrooke in Chesapeake will be completed by early 2014. Like the current sleep lab at the main hospital, every component of the sleep center will be uniquely designed for children, from kid-friendly bedding, to equipment fitted for smaller bodies, to technicians who are experts at making kids feel comfortable and interpreting medical data unique to children and teens.

Dr. Strunc hopes local pediatricians and family physicians across the region will ask patients and their families about sleep quality and refer even “ordinary” concerns – sleepless infants or kids who snore loudly or have disturbing dreams – for specialized testing. “Sleep disorders such as insomnia, sleepwalking, restless leg syndrome, narcolepsy and sleep apnea can have a big impact on a child’s behavior, performance in school, mood and growth in general,” Dr. Strunc says. “That’s because sleep is critical for body and brain health, hormonal balances and the function of the immune system.

“Unfortunately, many young kids and teens with more common sleep disturbances go undiagnosed, often for years, or they are misdiagnosed with another condition such as depression or attention deficit disorder,” Dr. Strunc says.

Dr. Strunc will continue to monitor Tiana’s progress and possibly adjust her medication to help her sleep better at night. He’s already happy with her quick improvement, which includes fewer headaches.

“It was like night and day after Tiana started treatment. Now she can be awake and alert during the day,” he says. “She can be this awesome kid who can do whatever she wants, with no limitations. That’s what we want for all of our patients.”

Drs. Strunc and Loma-Miller practice with Children’s Specialty Group, PLLC, at CHKD.