Childhood Onset Severe Neurological Impairment: Where medical complexity and uncertainty meet [Paperback]

Children with disorders of the brain can have fulfilling lives along with risk for problems that impact health and quality of life. This book offers guidance when navigating complex and emotionally hard circumstances, with an emphasis on improving a child's outcome when possible and achieving improved symptom treatment always.Childhood Onset Severe Neurological Impairmentconfronts 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.Preface1. Introduction: challenges and complex considerations2. Decision-making when there is uncertainty3. Chronic and acute pain and irritability/agitation4. Gastrointestinal problems: recurrent retching, vomiting, abdominal pain, and feeding intolerance5. Problems of the central nervous system: spasticity, dystonia, dysautonomia, seizures, delirium, dementia, altered sleep/arousal, and disorders of conciousness6. Respiratory problems: recurrent pneumonia, excessive secretions, respiratory distress, and acute and chronic respiratory failure7. Altered baseline (temperature, heart rate, blood pressure, growth, puberty, sodium regulatil³Ä