Starting school is an exciting time for you and your child, but it may seem daunting too, especially if your child has so far only been looked after by you and other family members.
You will be glad to know by working with the school, the metabolic team and any others involved in your child’s care (such as, grandparents), the process will be smooth. Remember, it is likely there will be other children with specific dietary needs and most schools are familiar with managing special diets. There is no reason why your child’s phe levels won’t remain well controlled during school time. Here’s things you can do to prepare:
Ask your child’s dietitian to help you and your child prepare for starting school. You may want to discuss the following points:
Dietitian school visit
Your child’s dietitian may be able to visit their new school to explain about PKU and your child’s specific dietary management to schoolteachers and catering staff.
Lunch and snack planning
You might prefer it if your child takes a packed lunch so that you can provide appropriate choices (See ‘School Lunch Planning’ section for more information). Although, it’s also useful to discuss alternative options and your dietitian might have some practical tips that will help you.
Your child may get asked about PKU at school. You and your child’s dietitian can prepare some answers to these questions in advance. This will help them feel much more confident about anything they get asked.
Meeting with your child’s teachers and other staff to explain what PKU is, and why your child needs to follow a low protein diet is helpful. It is important they have an understanding of PKU to give them the confidence to help support your child’s needs in school. Here are some printable resources that should help with this:
An Introduction to PKU
This is a good way for school staff to gain a better understanding of PKU.
Metabolic Dietary Disorders Association (MDDA)
The MDDA provide sample letters for teachers which can be downloaded outlining the diet and care that is required plus other helpful resources. See mdda.org.au/school-starters/ for details.
The About Me document provides a summary of what PKU is and information about your child’s protein substitute. It also allows you to give contact details for family members if teachers have any concerns about your child during the school day.
Information for Caregivers
This document provides basic information about PKU and your child’s protein substitute. It is designed to supplement the information provided by you and your dietitian about PKU.
Talking things through with your child will give you reassurance that they understand how to manage their diet. Points you may want to discuss include:
If your child takes their protein substitute to school with them, pack it with their lunch so they remember to take it during their lunchbreak.
If your child prefers, use an ice pack or cool pack to keep the protein substitute chilled in their lunchbox until lunch time.
ASIEM PKU Handbook
The handbook lists foods that contain small amount of protein and guides to how much of a particular food contains 1g protein. Get familiar with this list to work out ways to incorporate protein to meet your child’s allowance into their lunchbox for both morning tea and lunch. Ideas include fruit, dried fruit, crackers, vegetable sticks and other vegetables ( ie 35g sweetcorn provides 1 g of protein), dairy free yoghurt ie coconut, foods made with low protein flour, low protein pasta or rice with sauce/vegetables. Remember to keep it simple, involve your child in what you put in the lunchbox taking into consideration what foods they are familiar and comfortable with. Remember to always refer to labels for allergen and other product information.
Lunchbox and snacks ideas
We have provided a week’s low protein lunchbox ideas.
Pizza twists with permitted vegetables or a salad
Raisins or dried banana chips
Pitta bread with mixed permitted salad filling
Low protein ‘cheese’ sandwich
‘Cheese’ scone with butter
Bagel with low protein cream ‘cheese’
Permitted vegetable or fruit stick
* Please refer to labels for allergen and other product information.
If your school has a canteen book a time to meet with the canteen manager to explain your childs’ diet. They will most likely want some information about your child and their dietary requirements to share with other canteen workers who are often volunteers. Spend time looking at the menu, products used and read labels to familiarize yourself with what is on offer and to work out what your child can and can’t order. Some schools will sell drinks, slushie’s and ice blocks which could be options should your child wish to purchase something from the canteen.
After-school activities may include physical sports. The following may help you plan for these activities:
Discuss PKU with the afterschool activity co-ordinator
It is helpful to tell them in advance that your child may need to take their protein substitute before or after the activity session You could use the resource-An Introduction to PKU to explain PKU to them.
Staying after school
It may be useful to pack extra permitted snacks and drinks for your child, depending on the length of time and physical demands of their activity session.
What if my child is exceptionally active?
If your child does lots of intense activity then it is important that they get enough energy (calories) from their low protein diet, to support their activity. Your dietitian will be able to discuss this with you in detail if needed.
If your child attends before or after school care discuss your child’s PKU and their diet with the appropriate people to ensure the foods they provide cater for your child’s special diet. They may require you to supply any special low protein products or protein substitute.
There is no need for your child to miss out on school celebrations or cooking sessions. The following tips should help:
Explain to the teachers that it is helpful to be told in advance of any class celebrations or cooking sessions, so you can provide permitted ingredients or low protein foods and drinks for your child.
Keep a supply of low protein foods
Keep a batch of low protein cupcakes or treats in the freezer so your child can take them in at short notice or provide the school with a batch for spur-of-the-moment class celebrations.
Remind your child and the teacher that your child cannot swap or share foods. You may suggest putting in place a class policy about not swapping food and drinks.