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Nutrition and Growth

Nutrition and Growth. Lesley Foster & Jacqueline Denyer. FACTORS AFFECTING NUTRITION. Oral hygiene difficulties / sore mouth/ reduced mouth and tongue movement Narrowing of oesophagus in RDEB, and difficulty swallowing Gastro –oesophageal reflux Constipation Gut inflammation

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Nutrition and Growth

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  1. Nutrition and Growth Lesley Foster & Jacqueline Denyer

  2. FACTORS AFFECTING NUTRITION • Oral hygiene difficulties / sore mouth/ reduced mouth and tongue movement • Narrowing of oesophagus in RDEB, and difficulty swallowing • Gastro –oesophageal reflux • Constipation • Gut inflammation • Lack of hand dexterity • Poor general heath (anaemia, pain) • Mood

  3. Growth charts • Traditionally used to measure height and weight • Designed for the healthy child • Are these relevant for children with a severe form of EB? • Is there an alternative, more accurate way of measuring growth in our EB population?

  4. OPTIONS • Oral supplements • Oesophageal dilatation • Short term gastrostomy feeding • Long term gastrostomy feeding • Bolus or overnight feeds

  5. The pros: Supplementary feeding when growth poor and swallowing difficult Weight and height increase A route for giving medication The cons: Decreased appetite Leakage and excoriation ? Link with colitis Increased gastro oesophageal reflux Bedwetting and soiling Gastrostomy feeding

  6. Abdominal distension and excoriation

  7. Abdominal Distension

  8. Points for discussion • The relevance of use of growth charts for children with severe EB? • What practical alternatives are there? • Should gastrostomy placement be a short term / long term/ or ‘last resort’ option? • Should we try to maintain nutrition and growth with oral supplements and oesophageal dilatation alone?

  9. CONCLUSION • Gastrostomy feeding - life saving at times but may not be the answer in all cases. • How do other centres monitor growth? • How do you manage feeding difficulties? • What problems do you encounter?

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