Feeding development and difficulties


  • Combining social eating with tube feeding for optimal outcomes

    • Enteral (tube) feeding is increasingly used to manage both short and long term feeding difficulties in children with developmental delays.[1]
    • Parents vary in their acceptance of enteral feeding.  Some report that mealtimes are less stressful, with tube feeding allowing focus on social interactions and enjoyment with reassurance that the tube feeds are meeting nutritional requirements.  Others struggle to accept enteral feeding considering it to be an unnatural method of feeding and an additional burden of care[2].  Levels of stress may be increased further when tube feeding regimes clash with family mealtime routines.
    • Outcomes of tube feeding are frequently measured in terms of improvement in physical health, growth and nutritional status but often don’t take into account the emotional consequences for the whole family[3].   Families may benefit for increased practical and emotional support[4].
    • Optimal management for some children is achieved through a combination of oral and tube feeding.  A family centred approach that empowers parents to make decisions on feeding plans may be beneficial.
    • When oral feeding is considered unsafe i.e. there is a risk of aspiration, tube feeding may be necessary. Oral feeds are not automatically precluded but may need to be modified to ensure safety for the child. ‘Social eating’ combined with tube feeding, can be a positive experience for the family and child.
    • Reducing tube feeds to promote hunger and increase oral intake is a useful strategy for reducing tube feeding dependency, only if the child is able to recognise hunger, understands that eating orally resolves hunger and has the skills to consume and adequate amount of food.  For some children these skills develop very slowly.
    • Promoting relaxed, social and enjoyable mealtimes and maintaining good nutrition supports children to meet their full oral feeding potential.
    1. Hewetson, R. and S. Singh, The Lived Experience of Mothers of Children with Chronic Feeding and/or Swallowing Difficulties. Dysphagia, 2009. 24(3): p. 322-332.
    2. Adams, R.A., C. Gordon, and A.A. Spangler, Maternal Stress in Caring for Children with Feeding Disabilities: Implications for Health Care Providers. Journal of the American Dietetic Association, 1999. 99(8): p. 962-966.
    3. Martínez-Costa, C., et al., Early decision of gastrostomy tube insertion in children with severe developmental disability: a current dilemma. Journal of Human Nutrition and Dietetics, 2011. 24(2): p. 115-121.
    4. Craig, G.M., G. Scambler, and L. Spitz, Why parents of children with neurodevelopmental disabilities requiring gastrostomy feeding need more support. Developmental Medicine & Child Neurology, 2003. 45(03): p. 183-188.

    Case scenario

    Mia is 3 years of age and has refractory epilepsy with associated developmental delay.  For the last 18 months she has been fed using a combination of oral and percutaneous endoscopic gastrostomy (PEG) feeds.  She currently has 4 bolus feeds per day given over about 40 minutes using a feeding pump.  Her parents are keen for Mia to increase her oral intake and for the PEG to be removed.  

    Remember to consider your own response before viewing suggested answers.

    Question 1

    What are the key elements of your assessment of Mia’s ability to meet her nutritional requirements orally and have her PEG removed?

    Answer Question 1

    Key elements of your assessment include:

    • Parent’s perception of the problem.
    • Medical, developmental, growth and social history.
    • Dietary assessment.
    • Observation of feeding.

    Your assessment reveals the following details:

    Parent’s perception of the problem.

    • Mia’s parents reluctantly agreed to have the PEG inserted.  Mia was growing poorly and an assessment by a Speech Pathologist indicated that Mia was not safe with thin fluids.  “We didn’t really want the PEG but felt we had to so that Mia could feed safely and her growth would improve.”
    • “Her growth is now good so we are hoping now that she is older that the PEG can be removed.  We think if feeds were reduced, she would be hungry and eat more.”
    • Feeding Mia takes up a lot of the day.  “Sometimes it feels as if there is very little time for anything else.”

    Medical, Developmental, Growth and Social History. 

    • Mia has refractory epilepsy with associated developmental delay. 
    • She has a history of recurrent chest infections and poor growth, both of which have improved since commencing PEG feeds 18 months ago. 
    • Recent Speech Pathology assessment continues to indicate that Mia requires puree or well mashed foods and thickened fluids.  Risk of aspiration increases during periods of increased seizures or if Mia is tired. 
    • Mia has regular Early Childhood Intervention Services to support her development.
    • Mia lives with both parents and two older siblings.  Her parents both work part time and share the care of Mia with support from extended family.  

    Dietary assessment

    • The majority of Mia’s nutritional requirements are provided by a paediatric nutritionally complete formula given via her PEG.  She has four bolus feeds given over 40 minutes. Feeds are well tolerated.
    • On good days Mia has 2-3 tablespoons of mashed or puree foods orally 2-3 times a day.  Occasionally she will take up to half a cup but on days when seizures increase her oral intake reduces.
    • She has small amounts of thickened water or juice throughout the day.
    • On waking in the morning or even if feeds are late being given, Mia rarely gives cues that indicate she recognises hunger.  Her intake at breakfast is no different to other meals.

    Feeing Observation

    • Mia was well at the time of the observation.
    • Seating provided postural stability. 
    • She was offered well mashed fruit and custard.   Initially Mia opened her mouth to accept the spoon but after 2-3 tablespoons she stopped. It was unclear if she was no longer hungry or was just tired.  She became upset when dad attempted to get her to eat more.
    • Mia did not appear interested in self feeding but is reported on good days to enjoy mouthing hard munchables or bite and dissolve textures.
    • She took a small amount of thickened juice from a cup.
    • Initially the meal was relaxed and enjoyable for both Dad and Mia, but became stressful when Mia was unable to complete the amount that Dad wanted her to eat.

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