Childhood Onset Severe Neurological Impairment. Where medical complexity and uncertainty meet

Childhood Onset Severe Neurological Impairment confronts the uncertain decisions resulting from the intersection between what is intended and what is possible, to achieve the best certainty that lessens decisional regret. Evidence-based and hypothesis-driven strategies are offered to improve health, while a framework covers when and how to reflect with parents and guardians, utilizing an iterative process.

Specific circumstances include intractable symptoms, feeding intolerance, intestinal failure, and use of technology. Communication is a cornerstone of this book, with strategies offered throughout and for each specific problem. This book will reinforce and expand skills, while promoting resiliency for individuals and teams. It provides innovative tools from a combination of evidence and the author’s 27 years of experience. The content will inform research and quality improvement projects, advancing the quality of our care for children with severe neurological impairment and their families.

• Includes the ABCD framework which outlines different considerations during phases of care and ensures equal attention to all phases
• The ABCD checklist tool outlines essential details that lessen iatrogenic problems unique to children with SNI (e.g. feed advancement, the pace of recovery)
• Includes an risk assessment tool, providing a framework to consider the likelihood that a given problem is modifiable
• · Provides communication strategies that factor in the child specific modification potential

Preface
1:Introduction: challenges and complex considerations
2:Decision-making when there is uncertainty
3:Chronic and acute pain and irritability/agitation
4:Gastrointestinal problems: recurrent retching, vomiting, abdominal pain, and feeding intolerance
5:Problems of the central nervous system: spasticity, dystonia, dysautonomia, seizures, delirium, dementia, altered sleep/arousal, and disorders of conciousness
6:Respiratory problems: recurrent pneumonia, excessive secretions, respiratory distress, and acute and chronic respiratory failure
7:Altered baseline (temperature, heart rate, blood pressure, growth, puberty, sodium regulation): what can happen, when not to worry, and how to rethink “normal”
8:Comfort as the primary care goal and end-of-life considerations for children with severe neurological impairment