1. FEEDING TUBE WEANING
Sydney
Markus Wilken
Saturday 12 Nov.
Germany Novotel Sydney Manly Pacific

2. PEDIATRIC TUBE FEEDING:
THE BENEFITS
• Protection from aspiration in children with dysphagia (2)
• Ensure caloric/fluid supply and weight gain (3)
• Gives families a break from stressful feedings(4)
• Non-palatable medication can supplied via tube
Most important: Ensure survival of critically ill children

3. PEDIATRIC TUBE FEEDING:
THE PROBLEMS
• Major (5%) and minor (73%) complications (5)
• Major: Septicemia, /Minor: Tube leakage (60 %)
• Decreased swallowing activity (6)
• Frequent vomiting (7)
• Overweight and failure to thrive (8)
• Reduced hunger-driven motivation to eat (9)
• High economic costs (10)
• Emotional stress for the parents (11)
• Higher mortality risk (12)

4. BASIC DOMAINS OF ORAL FEEDING
WHAT DO WE NEED TO EAT?
• Oral-motor and sensory development
• Motor development
• Health
• Initiative
• Interactional routines

5. TUBE FEEDING & FEEDING
DISORDER
How does tube feeding result in Feeding Disorder?

6. IMPACT OF FEEDING DISORDER
ON FEEDING BEHAVIOR
• Oral-motor and sensory development
• Reduces swallowing activity, vomiting, over-stimulation (16)
• Motor development
• Refuse to crawl with a PEG, bind the hands (NG-tube)
• Health
• Complications, hospitalization, feeding intolerance (5,17)
• Initiative
• No Hunger, no thirst, no initiative to eat (9)
• Interactional routines
• Food refusal (14), parental stress (11), conflicting recommendations

7. WHAT IS A FEEDING DISORDER?
…a good question! Because:
There are no universally accepted definitions or validated classifications of
common FDs (Feeding Disorders) of infancy.“
(Benoit, 1999, S. 339)
Symptoms of feeding disorder:
• Food refusal
• Vomiting
• Force feeding
• Pre- oral resistance
• And many more

8. DIAGNOSTIC
PROTOCOL
Ready for the wean?

9. THE DIAGNOSTIC MAINFRAME
A feeding behavior does not become a “feeding problem“
until it does not meet the expected performance for that
infant. For a “normal” baby without any medical diagnosis
or complications, we expect that the infant will take the
required amount efficiently, without colour change or
other physiologic compromise, and will gain weight.
(Wolf & Glass, 1992, p. 165)

10. EXPECTED PERFORMANCE FOR…
None Minimal Medium Normal High
Swallowing □ □ □ □ □
Oral Motor Status □ □ □ □ □
Gastric Transport □ □ □ □ □
Feeding tolerance □ □ □ □ □
Weight gain □ □ □ □ □
Growth □ □ □ □ □
Motoric Development □ □ □ □ □
Eating behavior □ □ □ □ □
Initiative □ □ □ □ □
Trauma symptoms □ □ □ □ □
Healthy child Cerebral Palsy Esophageal Atresia

11. INTAKE
• Phone conference with parents
• Tell me about your child!
• What is the problem?
• Medical conditions?
• Developmental status?

12. QUESTIONNAIRE
• Tube and oral feeding characteristics
• Feeding Schedule
• Weight, length, BMI
• Feeding Disorder Symptoms
• Psychosocial Situation

13. FEEDING VIDEO ANALYSIS
What we need:
• Feeding Situation (ca. 5 Minutes)
• Child and Parent are visible
Assessment
• Structured video analysis
• Functional swallowing evaluation
• Classification of feeding disorder

14. ANALYSIS OF MEDICAL REPORTS
• Indication for tube feeding?
• Possible medical complication during weaning
• Hypoglycemia, Feeding intolerance, Failure to Thrive
• Swallowing Evaluation:
• MBSS/ FEES
• Traumatic impact of medical treatment
• Recurrent intubation, suctioning
• Nasogastric tube placement
• Tube Weaning possible?

15. WHAT IS THE PROBLEM?
• How can the problem be explained?
• Is it a feeding disorder/tube dependency?
• How much variance is explained by the:
• Medical
• Behavioral/psychological
• Functional status?
• Is a feeding tube or a tube weaning indicated?

16. PREPARATION
• Assessment interview
• Regular Follow-ups
• Interventions
• Play
• Enjoy
• Adapted tube feeding
• The Goal:
• Reduce Feeding Disorder Symtoms

17. Treatment

18. THEORETICAL ASSUMPTIONS
• Eating and drinking is self-regulated
• The self-regulation capacity is suppressed by tube feeding
• Tube feeding must be terminated to establish oral eating
• Feeding disorder becomes visible once tube feeding is terminated…
• …and then it can be treated.

19. HUNGER INDUCTION
Before day 1 day 2 day 3 day 4 day 5
10. am 130 50
1 pm 130 130 130 120 90 60
5 pm 130 130 130 130 130 130
night 400 400 370 300 250 200
Total 790 710 630 550 470 390
day 1 day 2 day 3 day 4 day 5
Fluidal Intake
Nutrition intake
Urin/Bowl Move
Weight
Sleep Behavior

20. WHERE TO START?
• Playing, playing, playing…simply playing
• Child shows competencies and deficits
• Child leads through play
• Play playfully (more childish than educational)
• You can play dyadic or triadic, parents always welcome
• Play may last from 10-120 minutes
• Daily re-occurring: Start with play

21. PLAY PICNIC
LET THE CHILDREN PLAY
• Anything goes:
• Children define the rules
• All initiative is in the children's hands
• Nothing has to happen:
• No playing, just observing
• Not touching, just smelling
• Not eating, just playing
• No play picnic
• It is the child's choice

22. IN THE FEEDING SITUATION
• Where? Everywhere:
• on the floor, in the high chair, in the park, in the restaurant, in the car
• When? According to the child’s rhythm:
• In the morning, at lunch, in the afternoon
• How to work with the child?
• Intuitive, slow, sensitive
• Let the parents feed: feed the child only in exceptions

23. PSYCHOLOGICAL FEEDING THERAPY
• If the child doesn't speak…
• Communicate with gestures, mimicry, body
• Answer with gestures, mimicry, body
• If the child is hard to understand…
• Empathize and observe
• Interpret and reflect
• If the child doesn't understand me…
• Adjust my communication to the child
Treatment without words needs more
therapeutic intuition than technique.

24. WHEN CHILD REFUSE COMPLETELY
• Acceptance of food refusal to reduce stressful feeding situations
• Observe and discuss the signals of food refusal and acceptance with
the parents.
• Focus on the specific cues that trigger refusals
• Go back to play when the child is afraid to eat.
• For post-traumatic feeding disorder: Enable the child to cope with
negative affects during play.

25. WHEN FEEDING STARTS
• Rearrange the feeding situation to avoid refusal triggers
• Make the feeding situation more comfortable for the child.
• Help regulate feeding according to hunger and thirst signals.
• Encourage parents to feed slowly.

26. MAIN FRAMEWORK
• Home-based treatment means:
• Treatment at the child's environment
• In the child's circadian rhythm
• Demand on the therapist:
• Flexibilty (free time schedule)
• Developmental knowledge
• Therapeutic skills
• Intuition
• Feeding tube weaning is hard to predict

27. FOLLOW-UP & EVALUATION
12 11 Diagnostic
Preparation
Intensiv Treatment
Aftercare
10
45

28. FOLLOW UP (SIX MONTHS)
• Regular contact by phone for 4 weeks
• One conference per week
• Daily contact possible for 6 months
• Counseling in special situations:
• Infection
• Short term food refusal
• Growth and thriving
• Removal of g-tube

29. TUBE WEANING IN EARLY
CHILDHOOD
LONGITUDINAL OUTCOME
• Involved N=57/Excluded from the program=18
• Drop out= 7 Success Rate
• Evaluation before treatment follow-up
9 %
(1-3 years later)
• AQFT- Questionnaire:
Weaned
• Nutrition and tube feeding Not Weaned
91 %
• Frequency of symptoms
• Growth

30. FEEDING BEHAVIOR
Failed Failed
Successful Successful
P Before After
before treatment after treatmentb
treatment treatmentb
Feeding Aversion Scale 2.7 (0.6) 1.9 (0.6) .001 2.4 (0.8) 2.7 (0.1)
Food refusal a 75 (64) 2.4 (6.5) .001 11 (16) 11 (17)
Regurgitation a 44.9 (65.1) 1.2 (3.0) .002 40 (45) 3 (2)
Gagginga 46 (59.9) 4.7 (11.4) .001 113 (163) 17 (10)
Force Feeding a 33.8 (70) 6.4 (23.6) .08 13 (16) -
Bizarre eating habits a 20.7 (63.4) 18.5 (38.1) .89 69 (40) 0.6 (0.3)
Swallowing resistance 27.8 (51.4) 24.8 (51.4) .81 60 (79) 20 (17)
Sum of Symptoms a 243.4 (201) 56.4 (100.1) .001 277 (235) 54 (47)
a Frequency of occurrence of symptoms per month b Follow up one to three years after treatment
Values are means (SD). Comparisons were done using paired t-tests1.

31. GROWTH AND TUBE FEEDING
Before After
P
treatment treatment a
Body weight (z-score) 1 -2.5 (1.5) -2.6 (1.1) .24
Body (z-score) 1 -2.8 (2.1) -2.5 (1.5) .49
BMI (z-score)1 -1.1 (1.7) -1.2 (1.1) .77
Feeding Tube2 31 (100) 6 (19.3) .05
Nasogastric Tube² 16 (51.6) 1 (3.2)
Gastrostoma² 12 (38.7) 4 (12.9)
Jejustoma² 3 (9.7) 1 (3.2)
Percentage fed via Tube1 86.2 (18.0) 11.6 (29.5) .001
Values are either mean (SD) or number (%). Comparisons were done using two-sided t-tests1 for ordinate data or X² test2 for
frequency distributions. aFollow up one to three years after treatment.

32. COMPARISON HOME-BASED INPATIENT
TREATMENT
Home-based Inpatient
Treatment groups 1-3* 4-12
Infection rate 1/25** (year 2007) 15/50 (2010)
Treatment hours per day 4-10 h* 2-6 h
Treatment costs 4-8.000 €** 8,5-20.000 €
Medical consultation 1-5 per week 24 h**
Team size medium high*
Duration of treatment 7-10 days** 4-6 weeks
Children per year N=20-40 N=40-60*

33. FURTHER INFORMATION:
Markus Wilken
Hohlweg 4
D-53721 Siegburg
mail@markus-wilken.de
www.spectrumpediatrics.com