Neurological and neuromuscular conditions and symptoms

Julie M. Hauer and Kate W. Faulkner

in Oxford Textbook of Palliative Care for Children

Second edition

Published on behalf of Oxford University Press

Published in print May 2012 | ISBN: 9780199595105
Published online July 2012 | e-ISBN: 9780199665020 | DOI:

Series: Oxford Textbooks In Palliative Medicine

Neurological and neuromuscular conditions and symptoms

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Symptoms associated with the nervous system are common in paediatric palliative care. There are many challenges in managing these symptoms and caring for these children. Palliative care clinicians are in an ideal position to improve quality of life in this population, but are hampered by the limited literature for guiding management of these symptoms. Other challenges include the uncertainty of the prognosis of many of the conditions where there is impairment of the nervous system, assessment of the presence and source of distressing symptoms in non-verbal children with severe neurological impairment (SNI), and the lifelong nature of many of the symptoms encountered in such children. Many of the conditions are rare, affecting only 1 in 1500–2000 people, which further limits knowledge of the specific aspects of each condition. Parents face significant uncertainty about the risks and benefits associated with treatment decisions. In addition, as research is ongoing and ‘cutting-edge’ for some of these conditions, parents make decisions while simultaneously hoping that some breakthrough treatment will be developed. This chapter addresses several aspects of palliative care in the management of neurological and neuromuscular symptoms. The first section provides a brief overview of the major life-limiting conditions of the nervous system. The second section reviews the neurological symptoms that palliative care practitioners may encounter, and the range of therapeutic approaches that are used.

Chapter.  12521 words.  Illustrated.

Subjects: Paediatrics ; Palliative Medicine

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