• ethics
• gastroenterology

A 14-year-old adolescent with complex motor disorder and severe cerebral palsy was referred for further management. Over the last year, he developed poor feed tolerance, increasing dystonia and distress with feeding. There was no improvement with medications or continuous jejunal feed. Symptoms improved with enteral hydration or intravenous fluid. In the absence of identifiable cause for their child symptoms and the apparent feed/symptom association, the family wanted to explore all options, including parenteral nutrition (PN).

Neurodisability is an umbrella term used to describe a heterogeneous group affected by central nervous and/or neuromuscular deficit. Their motor functional output can be objectively assessed by Gross Motor Functional Classification,1 but the group comprises a diverse and often overlapping range of difficulties. The enteric nervous system, a semiautonomous part of the nervous system responsible for regulating the gastrointestinal (GI) function, is invariably affected with neurodisabilities and can drive some GI complaints.2 With increasing longevity of children on the extreme end of neurodisability, a new chapter of complex GI symptoms begins to unravel, and novel terminologies, such as GI dystonia, although poorly understood, are fast becoming embedded in medical jargons.

PN is classically used to provide nutrition when the GI tract is unable to support sufficient nourishment. In most children, the requirement of PN is temporary, but minority will need long-term nutritional support, home PN and intestinal transplantation.3 In the neurologically able child, healthcare professionals can navigate this journey supported with guidelines and a plethora of evidence,4 but are left to the ambiguity of anecdotal evidence and personal experience to deal with the neurodisabled child who develops declining gut function, leading to variation in practice and divergence of care.

With the right level of multidisciplinary support and nutrition support teams, PN can sustain the nutritional need throughout childhood and transition to …