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Autologous Gastro Intestinal Reconstructive Surgery CREATIVE CARE Therapeutic & Specialised Play Service Study Day Autologous Gastro Intestinal Reconstructive Surgery CREATIVE CARE Therapeutic & Specialised Play Service Study Day Manchester, 30 th September, 2014

Food aversion and Messy play therapy Mrs Sarah Wood (Consultant) and Miss Tracy Warburton Food aversion and Messy play therapy Mrs Sarah Wood (Consultant) and Miss Tracy Warburton (Health Play Specialist) Tracy. [email protected] nhs. uk Sarah. [email protected] nhs. uk

Food aversion and Messy play in SBS Objectives • To describe food aversion with Food aversion and Messy play in SBS Objectives • To describe food aversion with reference to SBS • To describe published literature concerning weaning and food aversion • To describe and experience messy play • To discuss PABRRU experience • Questions

Food aversion in SBS ‘excessive or extreme and consistently negative reaction or oral fluids Food aversion in SBS ‘excessive or extreme and consistently negative reaction or oral fluids or diet interfering with normal nutritional requirements’ Total or partial/ selective Why? Ø NBM/ dietary restriction – sepsis/ surgery/ management plan Ø ‘norms’ Ø NG – hypersensitivity (gag and sensation) Ø Oromotor skills not developed (0 -4 and 4 -6 months) (Illingworth et al 1964) Ø Suppression of appetite Ø Dislike of messiness

Food aversion and weaning • Multidisciplinary • Rapid weaning with starvation + Intensive therapy Food aversion and weaning • Multidisciplinary • Rapid weaning with starvation + Intensive therapy (Wilken et al 2013) • Trabi describes starvation + food/ play picnic • Behavioural manipulation/ parental treatment (Gutentag et al 2000, (2010) Williams et al 2007, Byers et al 2003) • Messy Play Why? Ø Ø Ø Reduce cholestasis Encourage adaptation Reduce overgrowth Social integration Maternal identity and reduction of PTSD (Wilken 2012) Cost less (Williams 2007)

Food aversion and Messy play A Holistic Approach For many of our children with Food aversion and Messy play A Holistic Approach For many of our children with Short Bowel Syndrome, the first year of life can be physically and emotionally challenging, for both the child and the family. From birth, babies often endure many medical and surgical interventions requiring long term hospitalisation, this can continue for many years. The resulting impact on the child and the family can be quite devastating. Holistic care is essential for these families to provide not only medical and physical input but also emotional support. This is where the role of The Healthcare Play Specialist as part of a Multi-disciplinary Team comes into place.

Food aversion and Messy play The Role of the Play Specialist Initial intervention begins Food aversion and Messy play The Role of the Play Specialist Initial intervention begins with a referral from the consultant or Ward Manager. On transfer from Neonatal Intensive Care Unit to Ward, Play Specialist will introduce self to patient and family. Liase with Physiotherapy and Occupational therapy sevices with regard to developmental assessment and formulation of play programs.

Liaise with the Speech and Language Therapy and Dietetic Team regarding the introduction of Liaise with the Speech and Language Therapy and Dietetic Team regarding the introduction of oral diet and weaning. Child accepting oral diet well Continue to monitor progress with the Multi-Disciplinary Team to discharge Child experiencing oral defensiveness and or food aversion Formulate specific individual messy-play feeding programs Provide intervention and support alongside the family. Notify Multi. Disciplinary Team about progress. Attend discharge planning meeting.

Short Bowel Clinic – continue support around overall developmental progress including feeding, behaviour and Short Bowel Clinic – continue support around overall developmental progress including feeding, behaviour and emotional Issues. Continue liaison with Multi-disciplinary Team both in the Trust and in the community regarding patient progression and any other interventions required.

Food aversion and Messy play Oralmotor programme • Session 1: face/ facial features/ inside Food aversion and Messy play Oralmotor programme • Session 1: face/ facial features/ inside my mouth • Session 2: Lips/ Teeth and Tongue He then cleaned the door. Mr Tongue’s House (Lick along the bottom lip and then across the top lip slowly. )

Food aversion and messy play Practicalities/ Case Food aversion and messy play Practicalities/ Case

Food aversion and Messy play Sensory/ Texture programme Sensory environment critical including sensations of: Food aversion and Messy play Sensory/ Texture programme Sensory environment critical including sensations of: ØSight ØTaste ØTouch ØTexture ØSmell and taste

Food aversion and Messy play Sensory/ Texture programme Ø Stroke and touch Ø Peek Food aversion and Messy play Sensory/ Texture programme Ø Stroke and touch Ø Peek a Boo Ø Hide and Find Ø Sensory Box Ø Baby Massage Ø Auditory play

Food aversion and Messy play Sensory/ Texture programme Ø Ø Ø Sensory Box Filling Food aversion and Messy play Sensory/ Texture programme Ø Ø Ø Sensory Box Filling and Pouring Vegetable Printing Collage (paper and dry foods) Games with Pretend Food and Real Food Making Necklaces Egg Heads Teddy’s Tea Party Playdough Modelling Dinosaur World/Swamp Build a Model Village Splatter/Finger Painting

Food aversion and messy play Results/ demographics • • 12 children (diagnosis <1 month), Food aversion and messy play Results/ demographics • • 12 children (diagnosis <1 month), 1 dev delay Gestation 26 -36/40 Birth weight average 1. 87 kg Bowel length preop 37 cm (average) by 27% to 42. 5 cm (average) • • All safe oromotor skills All receiving PN from diagnosis Main enteral nutrition NG (7), gastrostomy (5) 4 fed orally from diagnosis GROWTH VELOCITY UNAFFECTED

Food aversion and messy play Feed tolerance • • Commenced messy play 4 -52 Food aversion and messy play Feed tolerance • • Commenced messy play 4 -52 months (27) Duration 3 -17 months (10) 1/12 inpatient alone All tolerating bland (cat a) and liquid diet (cat 1) pre therapy. 7 tolerating puree (cat 2) Post therapy: Ø 100 % increase in mashed/ roughly mashed/ food with separate and hard lumps (Cat 3, 4, 5, 7) Ø 11/12 increased mixed texture food (p=0. 001) Ø Increased tolerance to savoury (p=0. 001) and sweet food (p=0. 002)

Food aversion and messy play Conclusion • • Fun Creative Individualised and holistic Involves Food aversion and messy play Conclusion • • Fun Creative Individualised and holistic Involves family Does NOT involve starvation Can be delivered as in/outpatient multidisciplinary Success between 83 -100%

References • • Byars KC, Burklow KA, Ferguson K, O’Flahert T, Santoro K, Kaul References • • Byars KC, Burklow KA, Ferguson K, O’Flahert T, Santoro K, Kaul A. (2003) A multicomponent behavioural program for oral aversion in children dependent on gastrostomy feedings. J Pediatr Gastroenterol Nutr 37 (4): 473 -80 Illingworth RS, Lister J. (1964) The critical or sensitive period, with special reference to certain feeding problems in infants and children. J Pediatr 65(6): 839 -848 Gutentag S, Hammer D. (2000) Shaping oral feeding in a gastrostomy tubedependent child in natural settings. Behaviour Modification 24(3): 395 -410 Mc. Curtin A. (2007) The Fun with Food Programme. Speechmark publishing ltd (Milton Keynes) Trabi T, Dunitz-scheer M, Kratky E, Beckenbach H, Scheer PJ. (2010) Inpatient tube weaning in children with long term ffeing tube depenecy: A retrospective analysis. Infant mental health journal 31 (6): 664 -681 Wilken M, Cremer V, Berry J, Bartmann P. (2013) Rapide home-based weaning of small children with feeding tube dependency: positive effects on feeding behaviour without deceleration of growth. Arch Dis Child 98; 865 -861 Wilken M. (2012) The impact of child tube feeding on maternal emotional state and identity: A qualitative meta-analysis. J Ped Nurs 27: 248 -255 Williams KE, Riegel K, Gibbons B, Field DG. (2007) Intensive Behaviourla Treatment for sever feeding problems: A cost effective alternative to tube feeding? J Dev Phys Disabil 19: 227 -235