Hypersomnolence is defined as excessive sleeping and may or may not have underlying conditions or co-morbidities. It is one of the many sleep disorders treated at The Insomnia and Sleep Institute of Arizona, where we work with patients as young as two years old. There are common instances where excessive sleepiness is to be expected, such as jetlag or after extreme exertion. But what if the condition appears to be chronic in your child and there doesn’t seem to be any reason for it? Hypersomnolence can present by itself, particularly in children, and it’s critical to identify it early. That’s why the Pediatric Hypersomnolence Survey (PHS) was created—so that early identification of such disorders, including narcolepsy types 1 and 2 as well as idiopathic hypersomnia (IH), could be more quickly determined for those aged 8 – 18.
Children who present with hypersomnolence usually need more evaluation, testing, and ultimately a correct diagnosis. The survey was developed in 2021 by researchers at Boston Children’s Hospital and is being used as a tool that requires help by schools, families, and clinical health providers. It is funded by The Coverys Community Healthcare Foundation as well as the American Academy of Sleep Medicine and is supported by the non-profit Wake Up Narcolepsy, which is dedicated to spreading awareness, education, and research about narcolepsy in order to inform better treatment and care.
According to one of the researchers, “We hope this survey can help triage kids and teens with narcolepsy or idiopathic hypersomnia more directly to sleep medicine providers for timely diagnosis.” The Executive Director of Wake Up Narcolepsy points out that “It often takes 6 to 8 years or longer to accurately diagnose a person with narcolepsy.” This makes the survey a “critical new screening tool that we hope will aid in shortening the diagnosis period for children suffering with narcolepsy.”
Why Diagnoses Take So Long—and What to do
A diagnosis for a sleep disorder has historically been difficult. This is because in many cases you need a referral from someone like a GP in order to even see a sleep doctor. That isn’t the case at The Insomnia and Sleep Institute, where no referral is needed. However, still many patients may not realize that certain symptoms are actually related to a sleep disorder. It is a little easier for children because their parents can monitor sleep patterns and are more likely to be aware of issues (contrarily, it can be very difficult for an adult who lives alone to notice symptoms of sleep disorders). Still, excessive sleepiness may be seen as “normal” or as a sign of a growth spurt—particularly in children who have had the disorder for some time.
Sleep disorders are often ignored or misdiagnosed by those who are not leading experts in sleep medicine. That’s why at our clinic, your very first consultation is with a sleep expert who can diagnose disorders, which is the first step in future testing and possible treatment. Testing often includes an overnight stay in a sleep lab. This can also be a barrier for some people, particularly parents, as it is a bit of a commitment and calls for more time and effort than a 30-minute physical with your GP. However, it is often a crucial part of the testing process and necessary to determine or rule out co-morbidities.
Managing excessive sleepiness or even curing it is possible when you work with sleep professionals. The first step on this journey is a diagnosis to determine the root cause, or causes. It may be necessary to treat co-morbidities at the same time. It is rare that a disorder exists in a vacuum. Since sleep affects every other part of your life, there is a good chance that excessive sleepiness has triggered or exacerbated co-morbidities such as excess weight, cognitive functioning, or developmental growth in children.
Are you ready to help your child get the sleep they need? Schedule a consultation with a pediatric sleep expert today. Call The Insomnia and Sleep Institute during business hours or, for the fastest response, complete the online contact form today.