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Strategies for narcolepsy in school

Narcolepsy is a chronic condition that effects the sleep-wake cycles. Sleep is crucial for physical, emotional wellbeing and cognitive functioning, so narcolepsy impacts many parts of a persons life.

Narcolepsy significantly impacts on the quality of night-time sleep leading to excessive daytime sleepiness. Some young people also experience hallucinations and cataplexy. Some people also experience micro-sleeps which impair concentration, focus and processing. Automatic behaviours may disguise the true level of wakefulness.

What are the main symptoms of narcolepsy?

Daytime sleepiness

The urge to sleep is very powerful and can happen even in stimulating situations like walking and riding a bike. Triggers include:

  • certain temperatures
  • subjects in school
  • teaching styles

Sleepiness can vary through the school day, depending on the timing of naps and medications.

Cataplexy

Is a momentary loss of muscle tone and comes in the form of:

  • slight tremors
  • eye lids drooping
  • head slumping
  • head lolling to the side
  • jaw dropping
  • slightly slurred speech
  • leg buckling causing them to fall over

Cataplexy can happen without a cause, but is often brought about by strong emotions the main ones being surprise, laughter and fear.

It can also happen during sport. Recovery is quick, usually within seconds. It is important to be mindful that safety is a concern during a cataplexy attack.

Automatic behaviour

Automatic behaviour means someone may appear to be concentrating or studying when in fact they are not. They are unaware that this is happening. For example, they have doodled or carried on writing something that does not make sense. Sometimes teenagers may appear to be awake when they are in fact having a ‘micro sleep’. They often will not recognise that they have been asleep.

Disturbed night time sleep

This means extremely fractured, poor night time sleep. A person with narcolepsy has a very different sleep structure to someone without the condition.

It is common to experience nightmares and hallucinations going into sleep and coming out of sleep. This can be extremely frightening as the experiences can be very vivid. This poor night time sleep contributes to excessive sleepiness the next day.

Effects of narcolepsy in the learning environment

In some instances, excessive sleepiness may present as children not paying attention in class, being distracted, fidgeting and disruptive.

Teenagers may also present as lacking motivation. This is likely to impact their ability to engage in more sedentary learning and retain information. They are expected to be in charge of their own learning more with, working independently, working on longer pieces of homework, revision, and so on.

It can impact a teenager’s ability to begin tasks by themselves, and persevere to complete tasks. Their frustration tolerance will be affected meaning they may be reluctant to ‘have a go’ with challenging tasks or keep going when things are not working out.

Excessive sleepiness can impact on someone’s social relationships. They may lack motivation or energy to socialise.

The condition has a direct impact on the part of the brain that regulates emotional responses (the hypothalamus). Research has shown that people with narcolepsy are more likely to have difficulty regulating mood than the general population.

People can experience feeling ‘different’ to their peers due to the overt symptoms of the condition and management strategies such as naps at school, fidgeting, impulsivity, automatic behaviours.

Further possible impact on learning including:

  • working memory
  • executive functions
  • processing speeds
  • attention span
  • focus
  • motivation
  • difficulty keeping up with conversation, specifically in group settings
  • sensory sensitivities, environmental distractions, stressors

Cognitive impacts of excessive daytime sleepiness and cataplexy may be further effected by co-occurring mental health difficulties, neurodivergence (such as autism and ADHD), and other personal stressors.

General recommendations

Young people may benefit from some of the following:

  • chunking information
  • checking that they are paying attention and understand what is asked of them
  • pacing in lessons such as short bursts of activity and then a break
  • consider ‘pressure points’ in the day for example, if they are most tired after meal, what additional support can be put in place
  • giving information both written and verbally
  • giving time for them to come to teaching staff to check out gaps in learning
  • allowing breaks to re-focus and re-charge
  • using an interactive teaching approach to improve engagement
  • using interests to cue them into learning
  • adapting the timetable to lessen demands
  • if they need to take a test, consider doing them at a time of day where they are more alert and have sufficient energy

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Disclaimer

Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.

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United Kingdom

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