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.
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.
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
Julie Hauer is faculty at Boston Children's Hospital. She has 27+ years of expertise in the care of children with severe neurological impairment, focused on those who have co-morbidities that impact health and quality of life, resulting in complex medical care and decision-making. Her work is focused on the intersection between complex care and palliative care, including development of assessment tools and communication strategies with parents. Innovative work includes chronic neuro-pain screening that guides mechanism specific treatment, care plans that distinguish Acute, Bridge, Chronic, and Direction phases of care, and differentiating features between feeding intolerance versus intestinal failure at end-of-life.
