The nutritional management of children with severe neurological impairment can be highly complex and, as life expectancy increases, the nutritional management of these young people can become more challenging. Oftedal et al (2024) have carried out a narrative review looking at the progression of the nutritional management of this patient group.

Over the decade there has been marked development in the assessment of this patient group’s nutritional status, with the development of tools to help assess ability. The challenges are clear around measuring length and body composition and often repeated accurate measurements of skinfold thicknesses or bioelectrical impedance can be useful to determine body composition alongside weight. However, these alternative measurements can be difficult to assess accurately and ensure consistency if various staff are involved. As dietitians, we recognise that children within this patient group will grow differently from their peers and that poor growth does not directly correlate to poor nutrition.

Gastrointestinal symptoms are commonly reported to be problematic, with a large number of these patients receiving tube feeding to ensure nutritional requirements are met. Whilst there is increased evidence base around the positive impact of fibre on the gut microbiome, there is limited evidence around the use of fibre in this specific patient group. Nevertheless, from the information available, the addition of fibre is positive for children and young people.

Gastrointestinal dystonia is a ‘new diagnosis’, which has been defined to capture the challenges that we see when feeding these complex children and young people. GI dystonia is a term used to encompass symptoms of distress (pain behaviour, hypertonicity, retching, vomiting, vagal phenomenon and abdominal distension). The best treatment for GI dystonia is not fully understood, but emerging evidence would suggest that tube feeding using blended diet may be beneficial. Even without the presence of GI dystonia, there has been an increased use of blended diet within this patient group, which has reported benefits in the management of gastrointestinal symptoms. The development of new interventions to support eating and development skills is being viewed as a positive step towards supporting these families.

The nutritional management of children and young people with severe neurological impairment is challenging for dietitians and healthcare professionals. An experienced dietitian is key in assessing and interpreting growth and providing strategies to improve long-term health outcomes. The authors conclude there is a balance to be found between adequate nutrition to support growth, development and well-being without over-feeding and the detrimental impact this would have on these young people.

~ Hazel Duncan, RD

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