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Narcolepsy in children and young people in Ireland: 2006-2017

Irwin Gill1, Aishling Sheils2, Elaine Reade3

  • 1Department of Neurodisability, Children's Health Ireland, Temple Street, Dublin, Ireland.

European Journal of Paediatric Neurology : EJPN : Official Journal of the European Paediatric Neurology Society
|August 19, 2020
PubMed

Insights

Most young people in Ireland diagnosed with narcolepsy after the Pandemrix vaccine experienced cataplexy and obesity. Treatment challenges were noted, though sodium oxybate improved obesity metrics.

Area of Science:

  • Neurology
  • Immunology
  • Pediatrics

Background:

  • Narcolepsy in young people is a significant health concern.
  • The Pandemrix vaccine has been linked to narcolepsy onset.
  • Understanding the characteristics of pediatric narcolepsy is crucial for management.

Purpose of the Study:

  • To characterize young individuals diagnosed with narcolepsy in Ireland.
  • To investigate the association with Pandemrix vaccine exposure.
  • To describe symptomatology, diagnostic findings, and treatment outcomes.

Main Methods:

  • Retrospective medical record review at Ireland's national tertiary referral center for pediatric narcolepsy.
  • Analysis of vaccine exposure, clinical symptoms, hypocretin levels, HLA DQB1*0602 status, and MRI findings.
  • Evaluation of treatment responses, including medication use and body mass index (BMI) changes.

Main Results:

  • Sixty-seven patients diagnosed between 2006-2017; 91% received the Pandemrix vaccine prior to symptom onset.
  • High prevalence of cataplexy (77.6%), low hypocretin (87.5%), high HLA DQB1*0602 positivity (95%), and obesity.
  • Treatment challenges were common, with 76.1% requiring multiple medications; sodium oxybate improved BMI and obesity scores.

Conclusions:

  • Narcolepsy in Irish youth imposes a substantial burden on education, physical, and mental health.
  • Symptoms can be resistant to medical treatment, highlighting the need for specialized care.
  • Prompt referral to tertiary centers for multidisciplinary management is essential for optimal outcomes.
Abstract

Keywords:
CataplexyNarcolepsySleepSodium oxybate

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