Pain, feeding and respiratory care in severe neurodisability

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Target exams

Red flags

• A sudden change in tone, distress, sleep, or feeding in a non-verbal child with severe neurodisability is pain or a treatable medical problem until proven otherwise, not baseline behaviour
• Recurrent or lower lobe pneumonia, a weak cough, and pooled secretions signal chronic aspiration and predict respiratory failure, the leading cause of death in this population
• A child who tires after twenty minutes of feeding, coughs or chokes, or loses weight despite adequate intake has an unsafe swallow and is aspirating until a videofluoroscopic study shows otherwise
• Hip dislocation, occult fracture, renal stones, dental abscess, and severe constipation are the most missed sources of pain in a child who cannot say where it hurts
• Overnight oxygen desaturation or morning headache with daytime somnolence points to sleep-disordered breathing or nocturnal hypoventilation, which needs polysomnography and ventilatory support not oxygen alone
• Untreated pain and untreated respiratory illness shorten life and erase quality of life, while coordinated multidisciplinary care changes both, so this is core paediatric work not optional comfort care

Life stages

Care settings

Clinical exam formats

Board mappings

• Recognises that the child with severe neurodisability at GMFCS level four or five lives under three intertwined threats of persistent pain, feeding failure, and respiratory compromise, and that coordinated multidisciplinary care changes length and quality of life
• States that a change from baseline in a non-verbal child is pain or a treatable medical source until proven otherwise, and names the observational pain tools the revised FLACC the Non-communicating Children's Pain Checklist and the Paediatric Pain Profile
• Names respiratory illness as the leading cause of death and admission in severe cerebral palsy and identifies the modifiable risk factors of secretions and sialorrhoea, aspiration, reflux, scoliosis, and sleep-disordered breathing
• Explains how the loss of motor sensory and bulbar pathways drives the shared pathophysiology in which chest infection amplifies pain, pain worsens feeding, and feeding failure seeds the chest, and justifies treating all three domains together
• Justifies the stepwise management of each domain: finding and treating the pain source with stepwise analgesia and a gabapentinoid for neuropathic pain, gastrostomy with reflux control for unsafe swallow or failure to thrive, and airway clearance antisialogogues and non-invasive ventilation for respiratory compromise
• Coordinates the multidisciplinary team across paediatric dietetic speech and language physiotherapy respiratory orthopaedic and palliative care, and integrates the instrumental swallow study overnight polysomnography and the respiratory prevention bundle into a shared care and advance care plan
• The three threats of pain feeding and breathing in the GMFCS four or five child and the principle that treating all three together breaks the deteriorating cycle
• The observational pain tools for the non-verbal child and the head-to-toe and system search for treatable pain sources including hip fracture dental reflux constipation and dystonia
• Respiratory illness as the leading cause of death and the modifiable risk factors of secretions aspiration reflux and sleep-disordered breathing with the prevention bundle of airway clearance antisialogogues immunisation and non-invasive ventilation
• Assesses a deteriorating non-verbal child with severe neurodisability, assumes pain and a treatable source, uses an observational pain tool, and runs the head-to-toe and system search to find and treat the source
• Decides on gastrostomy for unsafe swallow or failure to thrive using the instrumental swallow study and growth data, treats coexisting reflux, and runs the respiratory prevention bundle
• Counsels the family on the goals of care, the role of feeding tubes and home ventilation, the prognostic value of coordinated care, and the advance care plan, with cultural safety and an interpreter where needed
• Level 1: Recognition that pain feeding difficulty and respiratory illness are the expected baseline of severe neurodisability and that a change from baseline is a treatable problem until proven otherwise
• Level 2: Application of the observational pain tools, the instrumental swallow study and EDACS, and the respiratory prevention bundle to assess and manage the three domains
• Level 3: Coordination of the multidisciplinary team, the decision for gastrostomy and home ventilation, and the advance care and transition plan for the technology-dependent child
• Severe neurodisability at GMFCS four or five governed by three threats of pain feeding and breathing, the shared pathophysiology of impaired motor sensory and bulbar pathways, and the principle of treating all three together
• Pain assessment in non-verbal children with the revised FLACC the Non-communicating Children's Pain Checklist and the Paediatric Pain Profile, and the head-to-toe search for treatable sources
• Respiratory illness as the leading cause of death, the modifiable risk factors, and the prevention bundle of airway clearance antisialogogues immunisation and non-invasive ventilation
• Structured assessment of a deteriorating non-verbal child distinguishing a treatable source of pain or illness from baseline behaviour, using an observational pain tool and the head-to-toe search
• Interpretation of the instrumental swallow study, growth data, and overnight polysomnography, and the decision for gastrostomy reflux control and non-invasive ventilation
• Communication with the family of the goals of care, the role of feeding tubes and ventilation, and the advance care and transition plan
• Severe neurodisability as a population governed by the three threats of pain feeding and breathing, with respiratory illness the leading cause of death in severe cerebral palsy in the United States
• The observational pain tools validated for children with cognitive impairment and the systematic search for treatable pain sources including hip dislocation and occult fracture
• The stepwise management of each domain and the principle that coordinated multidisciplinary care changes outcomes
• Recognition of the deteriorating non-verbal child with severe neurodisability as having pain or a treatable source until proven otherwise, and the use of observational pain tools and the head-to-toe search
• Stepwise management with finding and treating the pain source, gastrostomy and reflux control for feeding failure, and airway clearance antisialogogues and non-invasive ventilation for respiratory compromise
• Coordination of the multidisciplinary team and the advance care and transition plan for the technology-dependent child
• Canadian approach to the three-domain care of the child with severe neurodisability, including the observational pain tools and the head-to-toe search for treatable sources
• The decision for gastrostomy and reflux control and the respiratory prevention bundle, with attention to equity of access for remote and indigenous families
• Coordination of lifelong multidisciplinary care, home ventilation, and the transition to adult neurodisability services