Beginning nursery or school for the first time can be exciting for children. If your child has phenylketonuria (PKU), here are some steps to consider to help give them a good, safe start.

Starting nursery

Some tips for parents whose child is starting nursery school:

• Take time to find a suitable nursery for your child. For one thing, the staff should have a positive attitude about accommodating special diets. Because your child lacks an enzyme to properly process phenylalanine, they need a lifelong low-protein diet.
• Meet with as many key workers as possible before your child starts nursery. Ask your child’s dietitian to accompany you whenever possible.
• Put together a healthcare plan for your child that explains what PKU is, and outline everything that should be done for your child while they are in the nursery. For example, staff must know how to administer protein substitutes, and what to do if your child eats something they shouldn’t, throws up the protein substitute, or refuses their food. The care plan is usually written by the nursery team, with guidance from you and your child’s physician, dietitian, and others. Review the plan at regular intervals.
• Give the nursery a list of acceptable, prohibited, and special foods in your child’s diet.
• Ask your dietitian to adapt nursery menus so they are suitable for a low-phenylalanine diet. Encourage your child to eat new foods that fit their diet while at the nursery. Ask for appropriate meal choices that closely match what the nursery gives to other children.
• Make sure the nursery knows what categories of food items you will supply, and what they will provide.
• Ensure the nursery team will supervise each meal or drink given to your child, and that they keep a record of everything your child does and doesn’t consume.

Starting school

Suggestions for parents whose child is beginning school:

• Establish a healthcare plan for this phase of education. If your child attended nursery school, this is a good time to update the plan, particularly if there is a change in protein substitute dose. If your child’s school or nursery is not adequately managing your child’s dietary needs, you should communicate your concerns to your dietitian or healthcare team.
• Raise concerns about your child’s progress at school with your healthcare team. Children with PKU typically have standard educational goals. However, research suggests that children with PKU may have an increased risk of learning problems. This may include difficulties with working memory, processing delay, sustained attention, and social functioning.
• Enlist school counselors and guidance personnel to reinforce the need for continued dietary restrictions. As your child grows older, peer pressure to conform to social behavior increases the likelihood that they will experiment with restricted foods.
• Establish and maintain open communication with your child’s school.

Last updated: Aug. 13, 2020

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Phenylketonuria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.