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

• Lack of hand dexterity

• Poor general heath (anaemia, pain)

• Mood

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?

OPTIONS

• Oral supplements

• Oesophageal dilatation

• Short term gastrostomy feeding

• Long term gastrostomy feeding

• Bolus or overnight feeds

Gastrostomy feeding

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

Abdominal distension and excoriation

Abdominal Distension

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?

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?