Children's Hyperinsulinism Charity

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Feeding Issues

Feeding problems are outlined in the UK National Guidelines for which the Charity provided parental perspectives:

Standardised practices in the networked management of congenital hyperinsulinism: a UK national collaborative consensus

A proportion of patients with CHI have significant challenges with oral feeding requiring support from a Speech and Language Therapist (SLT) at an early stage.  Feeding problems can occur early precluding establishment of milk feeding and successful progression with weaning and textures.

Long term tube feeding can impair oral feeding progress with the development of oral aversion. The exact cause of feeding problems is not known but is most likely multifactorial, with complex entangled interplay of therapeutic, environmental, developmental, and psychosocial issues. The management of feeding problems in CHI requires early recognition and timely multidisciplinary involvement to mitigate such factors.

Parents should receive consistent support from SLT to allay frustration and feed related anxiety. SLT should also aim to support other caregivers, including nursing staff who often actively feed infants in the hospital and raise awareness of cue-based feeding practices to minimise the risk of worsening of feeding problems.

While feeding problems are common in CHI patients, these should not preclude or dissuade oral feeding. The treatment team incorporating a SLT, should have a proactive aim to allow at least partial oral feeding, appropriate to the child’s age and developmental level. This remains relevant when beginning weaning and progressing through textures. At all stages in managing feeding difficulties, it is important to be responsive to individual acceptance of oral intake.

Pushing oral feeding at an early stage in the presence of stress cues will adversely result in later food refusal that might be more challenging.

Feeding issues in Hyperinsulinism

Diagram of Feeding Issues
Feeding Issues According to Age

Feeding is complicated in Hyperinsulinism, with feeding problems more frequent in severe cases.

The main feeding issues in Hyperinsulinism:

  • Sucking /Swallowing
  • Vomiting
  • Medications /treatments affecting appetite.
  • Gastrostomy or nasogastric tube affects normal feeding ability.
  • Hospital environment stressful/difficult to establish routines,
  • Reflux
  • Aversion/Refusal

Medical Management:

Feeding Issues associated with Hyperinsulinism are complex and multifactorial.

  • Hyperinsulinism disease severity
  • IV fluids of concentrated dextrose solutions used in the initial stabilisation of Hyperinsulinism disrupt the normal hunger drive.
  • Continuous feeds also disrupt the normal hunger drive and prevent development of hunger cues.
  • Recurrently disrupted oral feeding, pain associated with reflux and discomfort from abnormal gastrointestinal mobility compound the problem.

Tube feeding:   In babies and children with Hyperinsulinism feeding tubes are an essential tool in preventing hypoglycaemia and injury to the brain, but they can also contribute to feeding problems and frustrate feeding progression.

Hospital environment:  Timing of medications, tube feeding, ward rounds, procedures, sensory issues all interfere with the establishment of a routine.

Developmental:  long periods spend in hospital can impact on early development and motor skills, for example, where a baby experiences prolonged bed rest, they are not being handled during feeds this may cause difficulties with posture. As well as missed opportunities for oral and facial stimulation through normal hand-mouth play. Lack of varied sensory stimuli to the hands may reduce an understanding of texture established through hand exploration and hand-mouth play impacting on sensory development of feeding.

This can all impact on early development known as the Sensorimotor stage.

From birth until they turn 2, children are in the sensorimotor period. During this time, children use their senses and actions to learn and grow. This period begins with basic reflexes and advances through a series of “stages” to complex sensory and motor skills, and early symbolic thought.

What are some of the activities of the sensorimotor stage?

Children engage in a variety of activities during the sensorimotor stage to learn more about the world. Some of these activities include sucking, rooting, grasping, crawling, motor coordination, and visual tracking.

Psychological and Sensory: Unpleasant and sometimes painful experiences such as NG tubes, glucose testing, blood tests and other procedures may be detrimental to neonatal development which thrives and relies on positive experiences.


Feeding in the newborn period is an instinctive process that allows the baby to bond with Mum. Hyperinsulinism and the likely early hospitalisation can deny or limit this bonding. The impact of anxiety, helplessness, and guilt. Some HI Mums are prevented from breast feeding which could cause mental health issues or impact on the well-being of the mother.

One HI Mum described this loss of being able to breast feed as: ‘This was so incredibly hard, I felt like everything was being taken away from me


UK National Guidelines on Breast Feeding in Hyperinsulinism:

If a mother wishes to breastfeed, support should be provided to express regularly to protect her milk supply, and to allow her breastmilk to be given as expressed breast milk (EBM). The duration of EBM use is expected to be moderately short and likely to be dependent on diazoxide dose, response and individual circumstances.

If fluid intake is restricted, it may still be possible to put the infant to the breast for short periods which can help with bonding and maintain milk supply but requires agreement with the treatment team. Advice should be sought from specialist staff in this area such as breastfeeding advisors to increase the likelihood of success. Additional carbohydrate in the form of glucose polymers can be added to EBM if blood glucose levels are not maintained by medication alone.

As the child gets older, attitudes towards feeding can understandably become that it is laborious and functional. It has become a method to treat and prevent hypoglycaemia, rather than being an enjoyable experience it is often a time of anxiety, particularly if the child is reluctant to eat, or something that is dictated by outside factors such as medication times, hypoglycaemic episodes, other factors that impact on blood sugars such as needing to eat before exercise, bathing or going out, feeding is something that has to be done, to keep blood glucose levels stable.   

As well as the above-mentioned issues which are quite specific to Hyperinsulinism there can be other issues to consider such as: mobility and co-ordination, learning difficulties, sensory aversion, food refusal, dietary restrictions, eating disorders and selective eating.

For advice and information on feeding issues:

Feeding Tubes:

For information on the different types of feeding tubes:

Gastrostomy Care from Great Ormond Street Hospital website:

What happens when my child needs a nasogastric tube?
This video is made for parents and young people in hospital who want to see a nasogastric tube being inserted and hear how much it has helped the children who receive feeding support through the tube.

My child is getting a gastrostomy feeding tube
Our video shows the explanation from the GI consultant, the nurse specialist and dietician about children needing a gastrostomy feeding tube. The mum and paediatric feeding team talk about the surgery, the different types of feeding tubes and bolus gravity feeding and continuous pump feeding.

Thank you to What? Why? Children In Hospital – helping to prepare for hospital

More feeding Tube advice:

The Glycaemic Index and suggested food swaps to moderate blood glucose levels 

Watch Karen Erlandson-Parry Advanced Specialist Dietician at Alder Hey Children’s Hospital, explaining how the Glycaemic Index can help to moderate blood glucose levels.

Then download the pdf with a guide to the glycaemic index of popular foods and suggested swaps



Standardised practices in the networked management of congenital hyperinsulinism: a UK national collaborative consensus

Hall C, Banerjee I. Feeding Problems in Congenital Hyperinsulinism. Congenital Hyperinsulinism: A Practical Guide to Diagnosis and Management. De León-Crutchlow DD, Stanley CA, editors. Cham: Springer International Publishing (2019) p. 143–54.