The impact of Narcolepsy onChildren Ed Coates Vice Chair Narcolepsy UK
Declaration A parent of a (now) 17 year old daughter who was diagnosed with Narcolepsy and Cataplexy at age 11 (d...
What is Narcolepsy? Narcolepsy is a Neurological Condition causing a sleep disorder which affects the brains’ abilit...
What is Narcolepsy? Normal sleep is organised into a regular pattern of REM (Rapid Eye Movement) and non-REM stages....
What it is not>>>>!It isn’t just a bit of tiredness/sleepiness…or laziness bad temper a psychological condition ...
Understanding Narcolepsy 1 -Symptoms The Tetrad of symptoms:  Irresistible sleep attacks  Cataplexy  Hypnogo...
Understanding Narcolepsy 2 – What this really means  Irresistible sleep attacks …”as if you had been awake for 48 h...
Understanding Narcolepsy 3 Impacts: Educational Performance Behaviours (aggression, incl outbursts/violence) Emotions a...
Understanding Narcolepsy 4 Impacts:  Family and relationships…can lead to breakdown, and “care”  Misunderstandings and ...
Understanding Narcolepsy – inChildren Still very under diagnosed because the symptoms are often confused with other ...
Understanding Narcolepsy – in Children The Performance and Behaviour graphs ..……… a personal description based experien...
The Performance graph……or emotional journey Performance/Time 5 4.5 4 3.5 3 2.5 ...
The Crisis time episodes/outbursts 6 5 4 Episodes/outbursts 3 2 1 0...
Understanding Narcolepsy – in Children It gets better Little research/ little is known about the emotional journey f...
What Helped?Resilience Factors: family. timing…we already knew her character/abilities etc. support …esp. an Occu...
Narcolepsy ManagementThe aims of treatment  Normalise life as far as possible  Make work and education possible ...
of 16

Narcolepsy and children

Published on: Mar 3, 2016
Published in: Health & Medicine      
Source: www.slideshare.net


Transcripts - Narcolepsy and children

  • 1. The impact of Narcolepsy onChildren 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 2
  • 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 3
  • 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. 4
  • 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 5
  • 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 6
  • 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 7
  • 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 8
  • 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? 9
  • 10. Understanding Narcolepsy – inChildren 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. 10
  • 11. Understanding Narcolepsy – in Children The Performance and Behaviour graphs ..……… a personal description based experience and throughconversations with numerous parents. It gets better 11
  • 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 12
  • 13. The Crisis time episodes/outbursts 6 5 4 Episodes/outbursts 3 2 1 0 11 12 13 14 15 16 17 13
  • 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 14
  • 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 15
  • 16. Narcolepsy ManagementThe aims of treatment  Normalise life as far as possible  Make work and education possible  Make driving possible 16

Related Documents