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Failure and success in severe gastrointestinal disease complicating neurodisability: who is at the end of the line?
  1. John W L Puntis1,
  2. Michelle Hills2
  1. 1Department of Paediatric Gastroenterology and Nutrition, Leeds Children's Hospital, Leeds, UK
  2. 2Martin House Hospice and Leeds Teaching Hospitals NHS Trust, Leeds, UK
  1. Correspondence to Dr John Puntis, Paediatric Offices, off A Floor corridor, Old Main Site, The General Infirmary at Leeds, Great George Street, Leeds West Yorks LS1 3EX, UK; john.puntis{at}nhs.net

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Wahid et al1 describe a boy with cerebral palsy, epilepsy and severe learning difficulties who developed major gastrointestinal problems leading to an extended period of parenteral nutrition (PN) as an inpatient. There was a long preceding history of gut dysmotility followed by presentation with an acute abdomen, resulting in a subtotal colectomy and intestinal failure (IF). An important aspect of this case is that after a very long and difficult illness (and against all expectations), gastrointestinal function improved to the extent that weaning from PN was possible. Several years later, he is well and enjoying a good quality of life (QOL). On rare occasions, we have also seen this unexpected improvement in gastrointestinal function in similar patients with neurodisability.

With increasing survival rates for children with cerebral palsy, the authors highlight the difficulties faced by professionals and families in assessing and predicting both the value and burden of PN in young people with life-limiting, neurodisabling conditions who develop severe gut dysmotility. Important issues are raised, including uncertain prognosis, burden of care, QOL and how these factor into decisions about ongoing management. Cost of treatment is not discussed, but like Banquo's ghost, is an uncomfortable reminder of the consequences of policy2 since tariff payments do not fully compensate hospitals for management of IF.

PN is associated with well-recognised hazards, including risk of death from overwhelming sepsis, metabolic complications and life-threatening liver disease. The child described suffered from repeated central venous catheter (CVC) related sepsis, including fungal infection. Such episodes cause high fevers and enteral …

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