• Calories are required for growth and development as well as wound healing. Lesions in and around the mouth may cause problems with feeding, in particular breast feeding. Bottle feeding may be needed though with care, bonding can still occur. It is advisable to involve a dietitian early if weight gain is suboptimal.
  • When breast feeding, protect the skin on the baby’s face with cream or ointment as the baby roots for the nipple
  • Teething gels eg Gelclair® can be applied to the teat/ nipple or directly on the baby’s mouth to reduce pain when feeding.
  • Due to difficulty sucking, EB babies may need special nipples such as those used for cleft palate babies eg SpecialNeeds® feeder (previously called the Haberman feeder) or Pigeon™ nipple, with a reservoir and valve that allows milk delivery without vigorous sucking.
  • Herviros® solution is slightly anaesthetizing (contains Tetracaine) and can be applied in judicious amounts to painful blisters with a cotton swab.
  • Acidic foods eg tomato sauce, orange juice, anecdotally makes the skin of patients with RDEB more fragile.
  • Soften food
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Wudy’s story
Beyond Words to Describe our Experience

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Married for seven years, long-awaited first-time mother when I thought I was happiest...
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