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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Note: the same or similar goals may be shared by more than one domain of the Feeding Development Framework. The priority of potential goals should be determined in discussion with Mia’s parents.    

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Suggested strategies may include:

Ensure mealtimes are safe, relaxed, social and enjoyable for Mia and her family.

• Optimal oral intake is likely to be achieved when mealtimes are relaxed, social and enjoyable.
• Feed in response to Mia’s cues.  
• Ensure seating provides postural support.
• Provide textures that Mia can manage and that minimize risk of aspiration.
• Encourage participation in mealtimes by offering finger foods including hard munchables and bite ‘n’ dissolve textures that Mia can explore during mealtime.
• Limit mealtimes to less than 30 minutes (or no longer than the family meal time.)

Review PEG feeding regime considering:

• Does current feeding plan allow time between feeds to experience hunger?
  Mia has 4 bolus feeds per day given over 40 minutes. A gap of 2-3 hours may be needed for Mia to begin to feel hungry and show interest in eating.  It may be possible to give feeds over a shorter time. Offer food before PEG feeds.
• Can feeds be reduced to establish if Mia understands and is able to respond to hunger?
  As growth is adequate, a trial of reduced feeds may be indicated to help determine if Mia has the skills to increase her oral intake. If Mia’s intake of food or fluid is limited by oral motor skills, seizure frequency and fatigue then reducing PEG feeds to promote an increase in appetite is unlikely to be of benefit and may inadvertently lead to force feeding. (Note: Rapid reductions in tube feeds require medical supervision.)
• Can the size or number of feeds be changed to suit family routines and reduce stress associated with feeding?
  If considered safe, overnight feeds can reduce stress associated with feeding during the day.  Family mealtimes can then be enjoyed without need to also give a PEG feed.  (Note: A medical referral or consultation may be indicated before commencing overnight feeds.)
  Some families prefer routines that combine PEG feeds with the social experience of family mealtimes.  This can also be beneficial for helping children to link intake of food with hunger and satiety.   Other families find administering PEG feeds at mealtimes disrupts social enjoyment.  This may be influenced by the method of feeding.
• Can some of the PEG feeds be replaced with nourishing oral fluids?
  Reducing feeds may promote thirst and encourage intake of oral fluids.  Water and juice are not suitable for meeting nutritional requirements.
  Note: Review of PEG feeding plan requires involvement of Mia’s dietitian.  By being aware of options health professionals can support families to seek assistance.

Empower parents to make feeding decisions for Mia

• Mia’s parents are best placed to make day to day PEG feeding decisions based on how Mia is eating.
• Consider a flexible feeding plan that allows parents to decide how much feed is given via the PEG based on how much Mia has eaten.This approach may be suitable for children whose oral intake varies considerably according to the level of seizures.  General guidelines provided by Mia’s dietitian will help guide decisions.  Accurate counting of calories increasing parent stress is not usually necessary

Support Mia’s parents to develop realistic expectations for Mia’s feeding.

• Parents vary in their acceptance of tube feeding. At this stage optimal management for Mia may be a combination of oral foods and formula via her PEG.  Increasing understanding of the benefits of combined feeding and considering feeding form Mia’s point of view may help increase acceptance and help parents to develop realistic expectations for feeding in the longer term.

Follow-up

Management of Mia’s feeding requires an interdisciplinary approach with involvement of a range of health professionals.  To minimise additional stress it is important that the family receive consistent messages. 

Regular follow-up is recommended to:

• Monitor the impact of any changes made to PEG feeds aimed at increasing Mia’s oral intake.  Establishing if Mia understands and is able to respond to hunger may take a few weeks.  Growth monitoring is required during this time. 
• If oral intake improves further reductions in PEG feeds may be indicated.
• If intake doesn’t improve and growth falters then an increase in feeds is indicated.  (Small amounts of weight loss are to be expected.)
• Ensure feeding is relaxed and social and that regime continues to fit in with family routines minimizing stress associated with feeding.
• Support parents to maintain a positive attitude and realistic expectations for Mia’s feeding.  If this becomes an issue referral to a Psychologist or Social Worker may be indicated.

At this stage combined feeding is likely to be needed.  If seizure management improves feeding may also improve.  Dependence on tube feeding may vary overtime.

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