Narcolepsy in Children

Narcolepsy is usually found in adults and although it is rare in children there are significant occurrences that studies have been published on it  from both the prestigious Cleveland Clinic and the Hospital of University of Pennsylvania.

The basic definition is that it is excessive sleepiness and that it can occur at any time throughout the day. It can interrupt regular sleep patterns as well as impact a child’s ability to learn and play.  It is thought to involve the areas of the brain that control sleep.  The Hypothalamus, the area of the brain that is our “stop and think” center also controls both wakefulness and sleep.  Over simplified, in conjunction with the brainstem (think about this being the base of your head and top of your neck)  and the back of the Hypothalamus keeps us awake (activating the “up center in the brainstem) and the front of the Hypothalamus puts us to sleep.

Sleep is not a passive process the brain is very actively  “thinking—cortex” inclusive of executive functions, memory and creative thought (think dreams that seem real).

Narcolepsy carries a DSM-5 code of 347.00 (Diagnostic Statistical Manual of Mental Disorders and an ICD-10 code of G47.419 (International Classification of Disease).

All of the above information is to affirm that the behaviors associated with narcolepsy, while they may seem intentional are not.  If fact these behaviors are so disruptive to the saccadic life rhythms that left untreated they can be associated with anxiety and depression.

There is no cure for narcolepsy but there is treatment that includes medication, behavior modification, education and activity regulation.

In school aged children the provision of scheduled nap times even in teens can be essential for the child to maintain critical learning abilities. Conversely forcing such a child to “stay awake” can cause frustration and negative behavioral reactions.

Narcolepsy should be classified under “other health impaired” for IEP purposes and specific accommodations and modifications should be made for these children. Suggestions for addressing narcolepsy during the school day are:

  1. Provide time for the child to take one or two short (15-20 minutes) naps during the day
  2. Make sure teachers are aware of the condition so that this behavior is not mistaken for laziness or lack of interest
  3. Avoid activities that could be a danger to health such as swimming, except when child is in an affirmed state of wakefulness
  4. Establish and maintain a set schedule so that the child’s wake/sleep rhythms can be addressed
  5. Avoid boring and repetitive tasks –diversity is key to sustaining wakeful interest
  6. Provide extra time for tasks and tests’ inclusive of short breaks during class and/or tests.
  7. Have teacher share with student “missed material” via email, slides, powerpoint, etc.
  8. Providing audio versions of textbooks may also be helpful
  9. Use of “SmartPens” that can record and write so that taking notes is facilitated during “down times”
  10. Make sure the child stays active in class, let them sit in the back so they can get up as needed, sit on a sitball that gives sensory feedback, chew gum, etc.
  11. Take and exercise break after a test for about 15-20 minutes
  12. Studying and discussing assignments with a “work buddy” also increases alert behaviors.

At home:

  1. Keep the rooms cool
  2. Do homework while standing (maybe near the kitchen countertop)
  3. Limit after school activities
  4. Take a short nap when the child gets home from school
  5. Have a regular sleep schedule

References:

Broughton RJ, Guberman A, Roberts J. Comparison of the psychosocial effects of epilepsy and narcolepsy/cataplexy: a controlled study. Epilepsia 1984; 25:423–33.