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Table 10 Guidance for giving protein substitute to young children

From: PKU dietary handbook to accompany PKU guidelines

• Establish a routine – always give protein substitute at the same time each day.
• Protein substitute should always be supervised by an adult.
• All caregivers should use the same consistent approach.
• Administer at mealtime or with a snack.
• Continue to offer even when a child refuses or is unwell. Giving a child a ‘day-off’ from protein substitute will adversely affect their blood phenylalanine control and deliver a wrong message i.e. that ‘it may be okay to stop protein substitute.’ Stopping a protein substitute even for 24 h may create difficulties with its re-introduction, particularly in young children.
• It is important that children understand from an early age that their protein substitute is just as important as any medicine.
• It is good practice to check that no protein substitute is left behind in containers or pouches.