T N C

THE IMPACT OF NARCOLEPSY ON
CHILDREN
Ed Coates
Vice Chair
Narcolepsy UK
DECLARATION

A parent of a (now) 18 year old daughter who was
diagnosed with Narcolepsy and Cataplexy at age 11
(during year 7)

I am a Children’s Social Care Manager working with
Children in Need of Protection, Children in Care and
Children with Disabilities

All medical comments are of a general nature and
therefore you should consult your medical advisers
regarding treatments
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THE IMPACT OF NARCOLEPSY ON CHILDREN; THIS
PRESENTATION
Who this is for….
 Some reality checks : (what Narcolepsy is ….and what it
isn’t)..I explain the symptoms.
 ….and the true impact…particularly the relevance of
emotional and other “non medical issues”
 Discuss the management of the condition & what helps
 Discuss Parents roles “Working together”/teams/ &
support
 Raise some other themes, further ideas/work/research
 questions/discussion throughout

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
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.

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
6
UNDERSTANDING NARCOLEPSY - SYMPTOMS
The Tetrad of symptoms:

Irresistible sleep attacks

Cataplexy

Hypnogogic hallucinations

Sleep Paralysis
Plus:
Extreme emotional responses and behaviours
7
UNDERSTANDING NARCOLEPSY – 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
8
UNDERSTANDING NARCOLEPSY - 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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UNDERSTANDING NARCOLEPSY IMPACTS:
 Family and relationships…can
lead to breakdown,
and “care”
 Misunderstandings and labels:
(lazy/aggressive/useless/unintelligent/disabled/
uncooperative….&etc)
 Driving
10
UNDERSTANDING NARCOLEPSY – IN
CHILDREN

The Performance and Behaviour graphs ..…
…… a personal description based experience and
through conversations with numerous parents.

It gets better….but only if we do get the right help
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THE PERFORMANCE GRAPH…
…OR EMOTIONAL JOURNEY
Performance/Time
5
4.5
4
3.5
3
2.5
2
1.5
1
0.5
0
Performance/Time
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THE CRISIS TIME
episodes/outbursts
6
5
4
3
Episodes/outbursts
2
1
0
11
12
13
14
15
16
17
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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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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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NARCOLEPSY MANAGEMENT
The aims of treatment

Normalise life as far as possible

Make work and education possible

Make driving possible
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NARCOLEPSY MANAGEMENT

Life style changes

Accept condition – not fight – understand it

Control emotions

Review educational & career aims

Prophylactic naps

Diet (avoid carbohydrates)

Bedroom safety
 Drugs
Narcolepsy : The balance between staying awake (daytime) and
good sleep at night.
& Treatment for Cataplexy
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NARCOLEPSY MANAGEMENT

Understanding/ not criticism or blame

Practical solutions with emotional support (not all
solutions are welcome as they intrude on the normal!)

Sleep Hygiene and routines

Daytime Naps

Sleep is a treatment for sleepiness

Nap before vigilant periods


Employer/school co-operation

Prophylactic NOT recovery

Short (10-20) minutes

Stimulant boost before nap
A nap is treatment not surrender!
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NARCOLEPSY MANAGEMENT :
WORKING TOGETHER




Carers, Teachers, Medics, CAMHS, Psychologists …&
etc need to!
Typically agencies will think in terms of their own
specialism….but they also need to think what does
Narcolepsy mean for this young person in the
context of their involvement
Collective views and plans around the child are
needed
…..because Narcolepsy and Cataplexy will have
profound effects on this young person
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NARCOLEPSY MANAGEMENT
WORKING TOGETHER



Most children need a “Champion” to help
bring people together. That can be you, but
you may need help!
…..and the plan will need the young person to
buy in to it …..(and they may resist for a
variety of reasons).
And they…we all need….
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A LITTLE BIT OF LOVE!!
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NARCOLEPSY

MANAGEMENT ; MEDICAL TREATMENT
Excessive sleepiness

Stimulants (amphetamines, modafinil)
Sodium oxybate/ Xyrem

Caffeine

Widely available (tabs, coffee, drinks)
 Short acting, tolerance, diuresis
Naps



Cataplexy
Antidepressants (clomipramine, venlafaxine)
 Sodium oxybate/ Xyrem

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NARCOLEPSY TREATMENT
You must get follow-up – the diagnosis is just the start
 Have a holistic approach not just a medical one
 All people with narcolepsy should

be under the care of a specialist sleep service
 have the opportunity for annual follow-up
 receive support with school or workplace with education and
employment difficulties
 have the opportunity to meet with and give and receive
support from other patients

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WHAT NEXT…WHAT IS NEEDED?...SOME IDEAS…
More research on the (different) impacts of Narcolepsy
and Cataplexy on children, on people with Narcolepsy
generally, and on their wider family.
 Development of support systems for sufferers and their
families.
 Consideration of whether we should be pressing for
additional services from “Social Care” or Children’s
services/CAMHS as Children in Need.
 Education…for the educators/medical professionals/
psychological services and not just on the
medical/diagnosis issues

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SUPPORT IN EDUCATION
Understanding the condition (teaching the teachers)
 Use the materials available (from NUK)
 Naps
 Choices of subject
 Encouraging success
 Valuing
 Managing behaviours
 Medication
 Exams and adjustments to assessments
 Support in class
 ………& etc

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A WEEK IN SCHOOL
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THANK YOU……AND …ANY QUESTIONS
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