ESPE Abstracts (2014) 82 P-D-2-3-482

Feeding Issues in Children With Congenital Hyperinsulinism

Clare Gilberta, Kate Morgana, Louise Hincheya, Rebecca Margettsa, Alex Forsytha, Martina Ryana, Pratik Shaha,b & Khalid Hussaina,b


aGreat Ormond Street Hospital for Children NHS Trust, London, UK; bInstitute of Child Health, University College London, London, UK


Background: Congenital hyperinsulinism (CHI) is the most common cause of persistent hypoglycaemia in the neonatal period, characterized by unregulated insulin secretion by pancreatic β-cells. In addition to medical therapy, frequent feeding to prevent hypoglycaemia is one of the most important aspects in the management of CHI.

Objective and hypotheses: To identify the number of patients with CHI who have associated feeding difficulties and determine the level of parental concern around feeding issues and improve the outcomes.

Method: 15 consecutive patients with confirmed diagnosis of CHI who were admitted in our tertiary referral centre between 24th January 2012 and 16th August 2012 were included in the study. Information was collected from medical/nursing notes and also parents were asked to fill out feeding questionnaire.

Results: 87% (13/15) of parents had concerns about feeding at some point between admission and discharge. 73% (11/15) parents had concerns about feeding on admission whilst 60% (9/15) parents had concerns about feeding on discharge. The concerns raised were like unsafe swallow, vomiting, gastroesophageal reflux, not completing oral feeds and needing top up via gastrostomy. 92% (12/13) parents, who were concerned about their child’s feeding, were referred to the speech and language therapy and/or dietetics services. 33% (5/15) patients had a delay in discharge, out of which four had feeding issues causing delay in discharge. 60% (9/15) patients had a positive and 40% (6/15) patients had no change to their feeding method by the point of discharge respectively. No patient had a negative change to their feeding method.

Conclusion: Feeding difficulties are common in this group of complex patients. The cause of feeding difficulties in CHI patients is not clear and may be related to the disease pathophysiology or iatrogenic. This study highlights the need for dedicated feeding services to support the patient and their families. A follow-up study is in progress to evaluate feeding outcomes since we have now changed our practice.

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