A guide for educators and parents with Essential information for all: School Nurses, School Administrators, Special Education Teams, Parents, Teachers, Students
Narcolepsy is caused by the loss of brain cells that produce hypocretin, the chemical that regulates sleeping and waking. Symptoms include:
- Excessive Day Time Sleepiness (EDS): “recurrent periods of an irresistible need to sleep, regardless of whether or not the time and place are appropriate.”
- Cataplexy: Sudden loss of muscle tone, often triggered by strong emotions, such as laughter or anger. Only occurs in Narcolepsy Type 1.
- Hypnogogic/Hypnopompic Hallucinations: vivid, life-like “waking dreams” that occur on the edge of sleeping and waking and can be hard to distinguish from reality.
- Sleep Paralysis: Temporary inability to move or speak while falling asleep or waking up.
- Disrupted Nighttime Sleep: Difficulty falling asleep and staying asleep at night; vivid, often frightening dreams may occur. Can lead to sleep deprivation.
There are two types of narcolepsy. Cataplexy does not occur in Type 2, which is less common.
EDS is more than just feeling tired or sleepy at inappropriate times. Other issues associated with EDS and sleep deprivation include:
“It’s like sleeping with my eyes open” During micro-sleep episodes, a student’s brain is effectively “asleep”, but he or she may continue their activity automatically. If this happens while taking notes, for example, the student may look as though they are writing, but the handwriting will be illegible, and they will have no memory of the episode.
“It feels like there’s a fuzzy barrier between you and the rest of the world” Brain fog makes it difficult to concentrate and pay attention. Information is difficult to process, and it can feel “like the brain is running at half-speed.”
“I feel scatterbrained all the time” Sleep Deprivation can impact memory, especially short term memory. EDS also makes it harder to stay focused, particularly if the task is boring or repetitive.
EDS is a major source of academic problems for PWN. Many of the subtle signs of EDS are easy to overlook, as students often develop unconscious coping mechanisms to mask their symptoms. Fidgeting or excessive talking or movement may be an unconscious strategy to stay awake.
In addition to EDS, other symptoms of narcolepsy that might show up in the classroom can include:
Full-body collapses from cataplexy are rare. It more commonly manifests as “feeling weak in the knees” or other muscle weakness during laughter or strong emotion. Children may also make “funny faces” (ex. Fluttering eyelids or odd jaw and mouth movements), or the head may drop forward. Some PWNs learn to repress their emotions to try to prevent cataplexy attacks, which can have negative social repercussions.
Sudden weight gain is common. Students may also may seem to lose interest in activities due to lack of energy or cataplexy.
Narcolepsy is a hidden disability, like dyslexia or ADD, and PWNs are legally entitled to academic accommodations. Helpful accommodations include: extended time on tests and quizzes, modified homework assignments, starting school later, etc.
Sleepy students are not uncommon. Many factors contribute to this, from natural changes in teen sleep patterns to early school start times. Sleep disorders like narcolepsy can be a factor as well, but are often the last thing parents and educators consider when dealing with a struggling student.
Narcolepsy is a chronic neurological disorder in which the sleep/wake cycle is severely disrupted. It affects about 1 in 2000 people globally and symptoms usually begin in adolescence, but it can take years for people with narcolepsy (PWNs) to be properly diagnosed. Some symptoms of narcolepsy are also common in other conditions such as ADD and depression.
As a result, narcolepsy is frequently misdiagnosed. Excessive Daytime Sleepiness (EDS) and chronic sleep deprivation associated with narcolepsy can severely impact students’ daily lives and academic performance, and cannot be overcome without proper treatment. Academic accommodations, support, medications and lifestyle changes can help PWNs succeed in school.
Early diagnosis and treatment leads to better outcomes. Increasing awareness of narcolepsy and sleep disorders in school is the first step towards this goal. Educators can play an important role in identifying students when the symptoms of narcolepsy first appear.
Accommodations or modifications must be specific to address the unique needs of your child. You should speak with your child, school staff, and providers to determine what may work for your child.
Here are some ideas to consider:
- A safe, private place to take a short nap while at school
- Ability to go to the nurse as needed
- Extended time on tests and assignments
- Testing in private area so student can get up and walk around or stand Preferential seating
- Reduced homework or classwork
- Notes and study outlines for every class
- Modified or flexible class schedules (important classes scheduled when your child is most alert)Priority scheduling
- No penalty for lateness to school
- Ability to leave classroom and walk around if sleep attack approaching
- Snack/drink in classroom
- Accommodations on standardized testing (i.e., testing over several days; extended time; ability to take breaks
Knowledge is the Key to Effective Advocacy
The more you and your child can learn about narcolepsy and the impact it has on day to day functioning, the better you will be able to effectively advocate for accommodations or modifications needed to be successful in school.