This is a time of anticipation and, if it is the first time your child will spend long periods of time out of your care, some concern. With pre-planning, children with PKU/IEMs can easily make this transition and keep their PKU/IEM well controlled. There needs to be ongoing support and communication between the family, school and the metabolic clinic team. The following suggestions are a guide for planning and discussing your child’s PKU/IEM management with the preschool or school. Your clinic may have a dietitian or nurse available to talk to the school to help in planning and provide information on PKU/IEM.

Questions about Starting School

Talking to your child is an important part of preparing for preschool or school. While the school staff will do their best to supervise, you will feel more secure if your child understands and is able to manage their diet appropriately.

Things to talk to your child about include:

  • Knowing which foods are OK and which to avoid;
  • Bringing home uneaten food in the lunch box so that you can calculate units/grams/exchanges;
  • Buying only low protein food from the canteen;
  • Not swapping lunches with friends;
  • Deciding when to drink the supplement;
  • How to explain the low protein diet to other kids;
  • What to do about teasing/embarrassment about the diet. Some children may find it tough being different from other children, and they may feel embarrassed about having to eat different food and take their formula/supplement in front of others.
Who do you need to inform?

It is important that teachers understand why your child needs a special diet, and why it needs careful supervision.

You should inform the following people about your child’s PKU/IEM:

  • The principal, admissions staff, and preschool supervisor;
  • The class teacher;
  • The school nurse – for support and as an education resource;
  • The supervisor of after school care;
  • The tuckshop or canteen supervisor or cook.

What should I say to the school staff?

Firstly, they will need a basic understanding of PKU/IEM and the importance of the low protein diet. This may be the most difficult part of the discussion. You are probably familiar with the terminology and concepts of PKU/IEM but explaining it simply to others is sometimes difficult.

Anyone caring for your child needs to know that:

  • PKU/IEM is a genetic, non-contagious condition;
  • Children with PKU/IEM cannot break down one or more of the components of the foods we eat. PKU/IEM are caused by defects in certain enzymes (example PKU – an amino acid called phenylalanine (Phe), found in all foods containing protein);
  • All children need a certain number of enzymes for growth and repair of the body, but in PKU/IEM the extra enzyme builds up and can damage the developing brain and other parts of the body;
  • Staying on a protein restricted diet keeps the enzyme levels in a safe range and the child will develop normally;
  • Eating the wrong foods will not make them immediately sick, but will have a detrimental effect long-term;
  • A child with PKU/IEM has a very specific diet that is calculated by a specialist team with portions measured out daily by the child’s family – so it’s important that there is a system in place at school to supervise the type and amount of food they eat during the day;
  • Parents must be informed if the child has eaten food that is not allowed or does not eat foods that are sent from home.

Each facility or school will vary in what they provide in terms of meals or canteen food.

You will need to decide whether to:

  • Provide all the food your child will eat at school;
  • Provide the main meals but use the school canteen or preschool meals for snacks, such as fruit, salad plates or ice blocks;
  • Use only the school facilities – by either pre-ordering the low protein foods from the preschool menu or providing low protein bread for the school canteen to make into sandwiches with low protein fillings.

Your child may be happy to drink the supplement at the usual times at childcare/school. Label it with their name and store it in the childcare/school refrigerator. Encourage your child to take the supplement to preschool or school to help spread the intake throughout the day.

Carrying it in covered drink bottles or pre-made drink packs (if available) helps avoid questions.

Prepare for these ahead of time by keeping a supply of pre-made low protein cupcakes in the freezer, or low protein biscuits and lollies with your child’s teacher.

If the class is learning about food or cooking, your child can share food such as low protein cupcakes, so they’re not excluded.

This is a very personal decision that should be made by the family and child. Many children feel it is important that their friends know about their metabolic disorder so that they understand or can help offer support in social situations. If your child doesn’t want to tell friends at school, consider the idea of inviting friends over so that you can help explain their metabolic disorder. Some parents also provide a presentation to their child’s class, offering classmates the chance to ask questions and see the ‘tools’ of the metabolic diet, such as formula and blood sampling material.

Again, this is a personal decision that can only be decided by you as everyone takes a different approach.

More Helpful Resources

Sample Letters for School/Teachers & Parents of Classmates

Sometimes writing a letter/email to the school/teachers and parents of your child classmates can really help to start the communication and educate them on your child’s IEM.

If you are unsure what to write, we have two sample letters that can be downloaded.

Learn More
IEM Kids School Stories

Hearing about other IEM kids experiences starting school can be helpful in a lot of ways. Mainly hearing about their experience can help reassure you that your child will have a regular school experience like any other kid, happy and healthy. It’s also a great way to get some tips on lunch box ideas and dealing with school challenges.

We have collected some of these stories from kids and parents in the MDDA community which you can read by clicking below!

Learn More
Lunch Box Tips

One of the big things about going to school is what to pack in the lunch box. We have collected some of our communities best Low Protein Lunch Box Tips for School Starters and Back-to-School kids.

Learn More
Online Patient Support Group Forum

The MDDA facilitate an online Patient Support Group Forum on Facebook that acts as a way for our community, who are located across Australia, to come together and support one another. The subject of school and transitioning into school is something that has been discussed on the Forum and people have shared some great advice that is truly invaluable.

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A Parents Perspective

Sometimes hearing from another parent about their child’s school experience can be really helpful and offer a sense of relief that your child will also be able to have a regular happy and healthy school experience. One of our PeeKabU kids Caelan’s parents were kind enough to share their schooling experience with us where they talk about expectations and communication.

Learn More