1. To (tube) feed or not to (tube) feed: how to decide? Charlotte M Wright Honorary Consultant Paediatrician, RHSC Yorkhill Professor of Community Child Health Glasgow University

2. Yorkhill Feeding Clinic Psychologist, Dietetician, Paediatrician Set up in 2002 to:  Wean children ‘stuck’ on tube feeding  Work with weight faltering children at risk of tube feeding  Assess need for tube feeding where there is doubt Assessment  Review full medical, dietary and behavioural history  Detailed growth and body composition assessment  Video’d meals  Dietary assessment

3. Three children referred for assessment for possible tube feeding Quadriplegic cerebral palsy Community staff recommending tube feeding because of  Feeding disco-ordination  Poor weight gain Parents unwilling or unhappy to start tube feeding

4. Assessing growth in cerebral palsy Children with cerebral palsy tend to  Be very short  Have low BMI (low muscle mass) Using SD scores to assess growth  0 = 50 th centile  -2 = 2 nd = 2% of all children  -4 = very tiny = <1in a thousand children A child who is proportionate will have roughly same weight and height SD score

5. Case study one: SM Boy aged 7.4 years Functional level  At level of 6 week old baby Eating  Enjoys being fed  Very slow, small amounts Health  No major illnesses Growth and fat stores  Emaciated +++  1.1 kg lighter than in 18m ago  Weight 11.3 kg (-8 SD)  Height -4 SD, BMI -6SD

6. SM Progress Tube feeding started slowly with close monitoring and mineral supplements to prevent refeeding syndrome Good initial weight gain, but then some re-loss, feeds increased further Less interested in foods, otherwise fine 20% heavier after 8m

7. Case study 2: AM Boy aged 16 years Major difficulties feeding at school Videofluoroscopy showed silent reflux Family told to stop all oral feeding Tube feeding started Referred to feeding clinic for 2 nd opinion

8. AM assessment Functional level  Limited cognition, no voluntary movement Eating  Enjoys food++; Little choking when fed at home Health  No chest infections or other ill health Growth  Has grown steadily till now, height 0.4 th centile Fat stores  Weight 30 kg (-5 SD) BMI -5SD  Weight loss (3kg) since stopped oral feeding  Body fat 9 th centile (~25 th before weight loss)  Lean mass 0.4 th centile

9. AM progress Continued full tube feeding Depressed ++ No change in health Family eating in secret so as not to upset him Regained lost weight Gradual improvement in mood Family give tastes of favourite foods as a treat

10. Case study 3: CF Girl aged 15 years Functional level  Lively and cheerful  In wheelchair  Voluntary movement of arms, poor coordination Eating  Loves her food but makes mess when eating Health  Excellent health Growth and fat stores  Stable growth pattern for 4 years  Weight -3-4SD, Height -3, BMI 2nd centile  Fat 9-25th, lean 9-25th centile

11. Progress No need for artificial feeding Support family and advise school on how to minimise mess Continued well at follow up

12. Pros and cons of tube versus oral feeding Favours tube feedingNeutralFavours oral feeding Eating Distressing Very slow Choking Silent aspiration on videofluoroscopy Enjoys food Videofluoroscopy normal Health Recurrent chest infections Good health Growth Progressive decline in BMI centile, BMI < -4SD Low / declining height SD Steady growth BMI > 0.4th Fat stores Significant weight loss (if not obese); Skinfolds ≤ 2nd Skinfolds ≥9th

13. Monitoring subsequent progress Is child happier and in better health? Are feeds well tolerated? Weight gain  Sufficient?  Excessive? Has their growth improved?