Newton-Wellesley Hospital is one of only three Boston-area facilities that maintain a sleep laboratory specifically designed for treating the unique needs of infants through teens.
Imagine That Your Next Patient had Neurological or Congenital Problems, was on a Ventilator, Weighed Less Than 10 Pounds, and Came With a set of Anxious Parents Watching Your Every Move. Treating Someone so Fragile can be a Scary Scenario, but it is not an Uncommon one for the Technicians and Physicians at the Pediatric Sleep Disorder Center at Newton-wellesley Hospital in Newton, Mass.
“When you have some of the younger sick kids, it can be trying emotionally,” says Amy Powers, RPSGT, chief pediatric sleep technician at Newton-Wellesley. “Pediatrics is a completely different ball game from adult sleep.”
The Newton-Wellesley Pediatric Sleep Disorder Center is a sign of this growing recognition that treating pediatric sleep disorder patients is different from treating adults. Opened less than 2 years ago, the center is partly the result of an increased understanding of the importance of healthy sleep in the intellectual and physical development and quality of life of infants, children, and teens, and partly a consequence of the corresponding rise in demand for specialized treatment for these patients.
“We felt it was an ignored area in our community and it was time to move forward,” says Bernard Kinane, MD, unit chief, pediatric pulmonary and cystic fibrosis unit, Massachusetts General Hospital in Boston. Kinane is part of the sleep center’s multidisciplinary approach to diagnosing and treating children with sleep disorders. This approach includes a pediatric neurologist and developmental/behavioral pediatrician, all under the medical direction of Eliot S. Katz, MD, a sleep researcher who joined the Newton-Wellesley Hospital staff in 2005.
ONE STEP AT A TIME
The pediatric sleep center is still in its early stages, having been in operation only since the fall of 2004. Located at Massachusetts General, it is a collaborative effort with Newton-Wellesley Hospital. Both hospitals are members of Partners Community Healthcare Inc, also based in Boston, which provides advanced tertiary and community-based health care.
For patients, this is good news. The hospitals are among the premier hospitals in the nation in biomedical research and are major teaching affiliates of Harvard Medical School. In addition, they have a long history of involvement in sleep medicine. In the early 1970s, Daniel Shannon, MD, set up a sleep laboratory at one of their hospitals and became a founder in the fields of pediatric intensive care and pulmonology, studying congenital central hypoventilation syndrome (CCHS). His clinical interests included diagnostic problems in infants, respiratory disorders affecting sleep and exercise, and home care of chronic respiratory disorders. “He has been a main person who has driven it all for us,” Kinane says.
To handle the growing workload of the Newton-Wellesley pediatric sleep center, there is, along with Katz, one full-time technician, one part-time technician, and one per diem technician (a college student) at the sleep center. Kinane spends about 50% of his time in the laboratory.
Many of the challenges that the clinic is facing are related to working with the youngest of patients. “A lot of the technicians are not trained with small babies,” he says. “We are opening a bed next to the pediatric intensive care unit at Massachusetts General for these very compromised babies. [The intensive care staff is] used to dealing with them all the time.”
The other challenge that the pediatric sleep center is working on is common to many sleep laboratories: efficiency. “It takes a while to train a technician to get comfortable doing two pediatric patients at the same time,” Kinane says. “We are surprised by the demand.”
SLEEP AND BEHAVIOR
Being a pediatric sleep center means being prepared to deal with more than just physical problems, such as sleep apnea and narcolepsy. Sleep disorders that are behavioral in nature are referred to Lori Gara-Matthews, MD, a behavioral pediatrician on staff at Newton-Wellesley. She has her own private practice and sees both children with developmental disorders as well as average children with sleep problems.
“For the most part, we see extrinsic kinds of sleep disorders, which are basically behavioral problems, where kids have trouble falling asleep or are waking up during the night (initial and middle insomnia),” she says. In addition, young children are often sleep walkers or early risers, and have sleep terrors (arousal disorders) that can be particularly frightening to parents.
Among teenagers, sleep phase shift problems are common. “They stay up too late on the weekends, then sleep in, and then on Sunday night they have trouble falling asleep,” Gara-Matthews explains. “It sets up a whole cycle for the week.”
On occasion, she sees parasomnias, but they are more unusual. “Less common is head-banging and sleep talking—sleep-wake transition disorders. Some of these are associated with rhythmic movements and are very self-limited,” she says. “The kids usually just require some reassurance.”
When Gara-Matthews’ diagnostic process does uncover a potential physical problem, she in turn will refer that patient back to the sleep center for testing and treatment.
PATIENCE IS KEY
A polysomnogram on a pediatric patient is very similar to one on an adult, Powers says. Like most sleep laboratories, the center’s laboratory has lots of amenities to make patients more comfortable, including a TV, DVD player, individual thermostat, and private bathroom. There are a few child-appropriate videos in the center, but parents also are encouraged to bring the child’s favorite DVD, as well as their favorite stuffed animal, pillow, or other comfort object.
However, unlike adult sleep studies, the patient is not alone in the room during the test. Because sleep studies at Newton-Wellesley and Massachusetts General hospitals are considered outpatient procedures, one parent must remain with the child during the polysomnogram. “We have cameras that we can zoom all the way in on the patient so the parents stay out of the recorded video,” Powers says. The same is not always true of the audio recording, though. “A lot of parents snore themselves,” Powers adds, “so unfortunately they usually make it on the audio recording.”
Powers says the sleep laboratory aims to record 8 hours of sleep, but the minimum they have to get is 6. “Depending on the time the child goes to bed and how they sleep, we sometimes get up to 10 hours of data,” she notes. Occasionally, the sleep laboratory will do a daytime study.
The most common condition diagnosed in the pediatric sleep laboratory is sleep apnea. “We see a lot of kids coming in for a sleep study prior to having their tonsils and adenoids out,” Powers says. “The [ear, nose, and throat physician] wants to see if the tonsils are actually obstructing their airway while they are sleeping.”
The sleep technicians also face their own challenges when performing studies on children. It takes a special kind of person to deal with patients too young to understand the treatment and cooperate with the study procedures. The most important trait that a pediatric sleep technician has to have is patience.
“You can put one electrode on and [the child] can pull it off as soon as you get it on,” Powers says. “A lot of them are afraid of hospitals and afraid of nurses and instantly burst into tears when you walk into the room. You have to be able to gauge each child and determine how you need to speak to them and at what level.”
At the same time, sleep technicians also must be understanding and patient with the parents who require explanations of what is being done to their child.
Sleep problems in children are not new. According to the National Institutes of Health National Center on Sleep Disorder Research, more than 2 million children suffer from sleep disorders, and it is conservatively estimated that between 30% and 40% of children do not sleep enough.
Gara-Matthews thinks that sleep problems in children have always been there and they are finally getting some deserved attention. “There’s so much interest now because one of the most important things that a family needs to function well is sleep.”
With rising demand, keeping up with referrals is no easy task, and on top of that the sleep center is also involved in research studies. “We’re learning on our feet and finding a lot of desire for our services,” Kinane says. “We didn’t realize how important it was.”
Currently, Katz and his colleagues are collecting data on metabolic correlates of obstructive sleep apnea/hypopnea syndrome in obese children and influences of airway pressure on upper airway motor control in children with sleep disordered breathing. Other areas that the sleep center would like to focus on in the future are aerodigestive and swallowing disorders, congenital central hypoventilation syndrome, and obesity.
“Within sleep, we recognize pediatric sleep is still in its infancy,” Kinane says.
Nina Silberstein is a contributing writer for Sleep Review.