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Caring for Children Who Have Severe Neurological Impairment


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This unique book provides detailed scientific information that is carefully explained in a gentle and thoughtful manner. This book provides a much needed resource for families struggling to stay informed and make decisions for their children. It also is a new and essential resource for pediatric palliative care professionals who walk alongside families as guides. -- Jody Chrastek, DNP, RN, CHPN, Children's Hospitals and Clinics of Minnesota Framing by symptoms, not diseases, Dr. Hauer gives practical diagnostic and therapeutic approaches to the most challenging problems faced by children with severe neurological impairment. Grounded in compassion, experience, and family-centered care, Caring for Children Who Have Severe Neurological Impairment: A Life with Grace is a must-read. -- Rishi Agrawal, MD, MPH, Academic Pediatric Association Complex Care Special Interest Group Julie's compassion for the struggles of families with children who have SNI and her concern for the quality of life of every patient who has SNI comes through. She conquers the complexity of combining all aspects of care-pain, GI, respiratory, spasticity, seizures, medications, end-of-life issues, and more-for patients who have SNI at all levels of involvement. Complex care issues combined with optimal quality of life information makes this a must-read for caregivers of those who have SNI-parents and clinicians alike. -- Dean and Teryn Suhr, MLD Foundation The realities of children living with severe neurological impairments is two-fold: a side of difficulties and dark moments, and a side of joy and light. Dr. Julie Hauer attends to both sides in this book, as she has done for every patient and family she has encountered over the years of her career as an esteemed and beloved physician devoted to the care of children with major medical problems. -- From the Foreword by Chris Feudtner, MD, PhD, MPH, The Children's Hospital of Philadelphia

Table of Contents

Foreword, by Chris Feudtner, MD, PhD, MPH
1. Caring for a Child Who Has Severe Neurological Impairment: An Overview
2. Impairment of the Central Nervous System: Specific Conditions
3. Treating Pain and Other Distressing Symptoms: An Overview
4. Pain: Evaluation and Treatment
5. Gastrointestinal Problems: Retching, Vomiting, Feeding Intolerance, and Other Problems
6. Respiratory Problems: Pneumonia, Excessive Secretions, and Respiratory Distress
7. Problems of the Central Nervous System: Spasticity, Dystonia, Dysautonomia, Seizures, andRelated Problems
8. Changes from the Expected: Sleep, Temperature, Heart Rate, Sodium Levels, Puberty, Growth, and Nutrition
9. Decision Making
10. Care at the End of Life

About the Author

Julie M. Hauer, M.D., is an assistant professor, medical director of Seven Hills Pediatric Center, and a staff member in General Pediatrics, Complex Care Service, at Boston Children's Hospital Harvard Medical School.


Caring for Children Who Have Severe Neurological Impairment... is the only book that has even made an attempt to tackle this difficult topic in any meaningful sort of way. The author has succeeded in creating what should become the caregiving Bible for any family of a child with severe neurological impairment regardless of diagnosis, or any medical provider for this population... The information provided, and the approaches recommended, are too important to be overlooked... Caring for Children Who Have Severe Neurological Impairment: A Life with Grace is highly recommended and should be on the bookshelf of every parent dealing with complex medical issues. -- Susan Agrawal Complex Child For the health-care professional who provides care or interaction at any level to SNI patients, this books is a valuable resource. This is also a great resource to refer to family members and care givers. It helps with understanding and assists with developing questions for the health-care team. The family members reading this book will increase their abilities to advocate for their child's medical, social, and emotional needs. It provides tools and information that promotes dignity and respect for life in all its phases. -- Marilyn Mills Journal of Radiology Nursing

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