It may be useful to have some ideas of what you need to speak with school staff about before your child starts school. Here is a checklist of all the things you will need to discuss.
Your child should have an individual healthcare plan that is discussed and agreed by yourselves, your child’s dietitian and the school. This plan should describe what PKU is and explain everything that needs to be done for your child whilst in school. This will include information about their low protein diet and protein substitute.
Review the healthcare plan at regular intervals, especially if there are any changes to your child’s dietary needs or protein substitute.
There is no need for your child to miss out on class milk and snack times. You can let the teacher know you are happy to provide low protein milk or a suitable milk alternative and a supply of low protein foods such as biscuits or cakes in advance if needed. You may want to suggest there needs to be a system in place to make sure the correct milk is given.
The fact that your child cannot swap or share food should be highlighted. You may suggest the possibility of putting in place a class policy about not swapping food and drinks. This may prevent them from feeling different or left out.
It is important that your child only eats and drinks the foods and drinks provided by you or that they are allowed in their low protein diet.
If any food is not eaten, then it needs to be kept and sent home in your child’s lunchbox to help keep a record of their daily protein intake daily.
It can be helpful to explain to teachers that if your child eats anything not permitted it isn’t a medical emergency. There won’t be any immediate noticeable side-effects, but parents or carers must be told.
Show the appropriate school staff your child’s protein substitute and discuss where this will be stored, how often they take it and when. Also include any specific preparation guidelines to be aware of.
Request to be contacted if your child does not finish their protein substitute during the school day.
This resource 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.
This page 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.