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Published on: September 20, 2019
Parenteral Nutrition in Pediatric Patients with Neurodisability: Current Perspectives
Emily White1, Mohamed Mutalib1,2
1Department of Paediatric Gastroenterology, Evelina London Children' Hospital, London, UK.
Insights
Parenteral nutrition (PN) offers a vital option for children with severe neurodisability and gastrointestinal dystonia when feeding is challenging. Decisions regarding PN require careful medical, psychological, and ethical consideration for each child.
Area of Science:
- Pediatric Gastroenterology
- Neurodisability Research
- Clinical Nutrition
Background:
- Pediatric neurodisability affects children with brain or neuromuscular issues, often impacting gastrointestinal function.
- Gastrointestinal dystonia, a new term, describes feeding-induced symptoms that improve with feed cessation.
- Improving life expectancy in neurodisability increases the need for advanced medical support, including nutritional interventions.
Purpose of the Study:
- To explore the complex medical, psychological, and ethical considerations of parenteral nutrition (PN) in children with severe neurodisability.
- To discuss the challenges faced by clinicians managing declining gut function in this population.
- To highlight the need for individualized decision-making in PN use for pediatric neurodisability.
Main Methods:
- Review of current literature and clinical practices regarding PN in pediatric neurodisability.
- Discussion of medical complexities, including gastrointestinal dystonia and nutritional support.
- Exploration of psychological and ethical dilemmas faced by healthcare providers and families.
Main Results:
- Parenteral nutrition is a viable, yet complex, option for severe gastrointestinal dystonia or inadequate enteral feeding in neurodisability.
- Decisions about initiating or withholding PN involve a multifaceted interplay of medical, psychological, and ethical factors.
- There is a lack of universally agreed guidance, emphasizing the need for individualized care.
Conclusions:
- The use of PN in children with severe neurodisability requires a holistic approach, centering on the child's individual needs.
- Close collaboration between pediatricians, families, and healthcare teams is crucial for optimal outcomes.
- Further guidelines and research are needed to support evidence-based decision-making for PN in this vulnerable population.
Abstract:
Pediatric neurodisability describes functional limitations in children with varied severity and complexity often attributed to brain or neuromuscular abnormalities. The life expectancy of children with neurodisability is improving, but many will require significant medical support. The gastrointestinal tract is usually affected in children with neurodisability and can lead to a wide range of symptoms. In gastrointestinal (GI) dystonia, a newly coined term, feeding will trigger a distressing dystonia and symptoms can improve with cessation of feed. Parenteral nutrition (PN) is often viewed as a viable option in severe GI dystonia or when enteral feeding does not support sufficient nutrition. The use of PN in children with severe neurodisability is complex. It involves an intricate interplay between medical, psychological and ethical factors. In the absence of a universally agreed guidance on the use of PN in this cohort, paediatricians should maintain the individual need of the child at the centre of the decision-making process and work closely with families and other healthcare professionals before initiating or withholding PN in children with severe neurodisability. In this article, we discuss the complex and multifaceted approach to the use of PN in children with severe neurodisability and aimed to explore the medical, psychological and ethical aspect dilemmas facing clinicians looking after children with declining gut function who may require PN support.
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