Abstract

This practical, evidence-based handbook is for all health professionals who care for children with feeding, nutritional, and gastrointestinal problems that derive from neurological disability, particularly cerebral palsy. This is a new revision of two previous books on this topic by the same editor (published in 1996 and 2009), and arises from the growing interest and research in this field during the last decade. The authors are some of the world’s leading experts in the field from Europe, Australia, and North America. They have contributed their extensive knowledge and expertise, and have reviewed all the recent studies and guidelines in order to address the most important aspects of this challenging topic. These include oral sensorimotor dysfunction, gastrointestinal problems, nutritional status definition, and nutritional impairment, as well as feeding and nutritional management strategies. The perspective of the handbook is practical, useful for both clinicians new in the field and those more experienced. Many of the chapters have included the description of clinical cases to enhance the key messages. Thanks to nutritionists and gastrointestinal pediatrician pioneers in this field (with a special mention to Prof Sullivan) and the progressive support of the multidisciplinary community in the field of childhood-onset neurodisability, nutrition is now part of the preventive program for any child with neurological disability. Early intervention and ongoing support are necessary to prevent undernutrition, defined by one or more of the so-called ‘nutritional red flags’, such as weight-for-age z-score <–2; triceps skinfold thickness <10th centile for age and sex; mid-upper arm fat or muscle area <10th centile; faltering weight and/or failure to thrive; and physical signs of undernutrition.1, 2 A skilled multidisciplinary clinical team is fundamental in assessing and managing children with neurological impairment and feeding difficulties. This includes the prescription and administration of interventions, as well as ongoing monitoring and adjustment of treatments as required. The main tools of interventions are detailed in the book, including oral nutrition support and/or enteral tube feeding. Oral nutrition support strategies include managing the child’s mealtime environment and positioning, offering modified food or fluid textures, and using adaptive equipment, caregiver behavioral techniques, and sensorimotor therapy. Despite modest evidence, the book also mentions emerging treatment options, such as robotic assistive feeding devices, intraoral appliances, and neuromuscular electrical stimulation.3 Whether and when to insert a gastrostomy feeding tube is one of the most important decisions in managing a child with neurodisability. It should take into account the interplay between outcomes of safety, efficiency, skill development, and mealtime stress, considered in the socio-cultural context in which the child lives.1, 2 Moreover, as increasing numbers of children with neurological impairment are undergoing gastrostomy placement and are now surviving beyond childhood into adulthood, the question arises as to whether long-term benefit could be achieved by starting enteral tube feeding earlier in life. Children and their families need to be at the centre of the team’s efforts. Families will require support and collaboration, working to reduce the impact on their lives of their child’s eating and drinking difficulties, including use of tube feeding.4 All members of the multidisciplinary team should be well informed about the indications for and advantages and disadvantages of tube feeding, so that a consistent message is conveyed to parents. Working in partnership with families of children with neurodisability has been shown to lead to improved outcomes.5 Understanding parents’ perceptions will help health professionals to develop effective, family-centered, patient-appropriate intervention and adherence strategies for tube-fed children with neurodisability. All these topical questions are dealt with in an instructive and persuasive way in this excellent handbook.

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