1. The impact of Narcolepsy on
Children
Ed Coates
Vice Chair
Narcolepsy UK

2. Declaration
 A parent of a (now) 17 year old daughter who was
diagnosed with Narcolepsy and Cataplexy at age 11
(during year 7)
 All comments are of a general nature and therefore you
should consult your medical advisers regarding
treatments
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3. What is Narcolepsy?
 Narcolepsy is a Neurological Condition causing a sleep
disorder which affects the brains’ ability to regulate the
normal sleep-wake cycle. This can lead to symptoms
such as disturbed night-time sleep and excessive
sleepiness throughout the day.
 It is often, although not always accompanied by a
condition called Cataplexy
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4. What is Narcolepsy?
 Normal sleep is organised into a regular pattern of REM
(Rapid Eye Movement) and non-REM stages. Every 90
minutes or so, a normal sleeper experiences several
minutes of REM sleep where dreaming occurs before
switching back to non-REM sleep.
 In most sufferers however, the nocturnal sleep pattern
is much more fragmented and they typically experience
numerous awakenings. REM sleep can occur very
quickly during the night or day, producing unusual
phenomena such as hallucinations.
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5. What it is not>>>>!
It isn’t just a bit of tiredness/sleepiness…or
 laziness
 bad temper
 a psychological condition
 lack of intelligence
 deliberate
 easily controllable
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6. Understanding Narcolepsy 1 -
Symptoms
The Tetrad of symptoms:
 Irresistible sleep attacks
 Cataplexy
 Hypnogogic hallucinations
 Sleep Paralysis
Plus: Disturbed sleep and sometimes REM Sleep Behaviour Disorder
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7. Understanding Narcolepsy 2 – What this really means
 Irresistible sleep attacks …”as if you had been awake for 48 hours
without any sleep” – frequent and not predictable
 Cataplexy….” you can’t laugh, cry, get angry get upset without risking
looking stupid or collapsing or …worse still completely losing control + all
of these”
 REM sleep and Hypnogogic hallucinations ….”realistic , sometimes
terrifying…and I mean terrifying real life dreams in which you see and
feel everything”…..”I had a maggot eating my brain from the inside”
 Sleep Paralysis…..being asleep but aware , but totally unable to move
In short – it really does have a massive impact
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8. Understanding Narcolepsy 3 Impacts:
 Educational Performance
 Behaviours (aggression, incl outbursts/violence)
 Emotions and feelings:
upset/anger/confusion/failure/sense of loss…
&etc)
 Social Relationships
 Self Esteem
 Activities/ hobbies/ sports
 & future employment
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9. Understanding Narcolepsy 4 Impacts:
 Family and relationships…can lead to breakdown,
and “care”
 Misunderstandings and labels:
(lazy/aggressive/useless/unintelligent/disabled*/
uncooperative….&etc)
 Driving
* Disability or impairment?
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10. Understanding Narcolepsy – in
Children
 Still very under diagnosed because the symptoms are
often confused with other things.
 Much more visible in recent years since an upsurge of
“Pandemrix cases”
 Now there are many more cases under age 10 than
previously.
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11. Understanding Narcolepsy – in Children
 The Performance and Behaviour graphs ..…
…… a personal description based experience and through
conversations with numerous parents.
 It gets better
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12. The Performance graph…
…or emotional journey
Performance/Time
5
4.5
4
3.5
3
2.5 Performance/Time
2
1.5
1
0.5
0
age3 age7 age 11 age 13 age 15 age 17
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13. The Crisis time
episodes/outbursts
6
5
4
Episodes/outbursts
3
2
1
0
11 12 13 14 15 16 17
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14. Understanding Narcolepsy – in Children
 It gets better
 Little research/ little is known about the emotional journey for
Children
 The early years are the most dramatic with major behaviours
often including the most dramatic and uncontrollable rages
against self and loved ones. This can include serious self harm
and sometimes attempts to die
 …and it isn’t a psychological condition it is a neurological
spectrum disorder
 This may be an area that families and the child themselves
needs the most help
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15. What Helped?
Resilience Factors:
 family.
 timing…we already knew her character/abilities etc.
 support …esp. an Occupational therapist at school
 medication…esp. Xyrem
 understanding/determination/knowledge
 meeting others
 Narcolepsy UK
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16. Narcolepsy Management
The aims of treatment
 Normalise life as far as possible
 Make work and education possible
 Make driving possible
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