Getting Ready for Big School

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: 

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. 

Questions 

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.

An Introduction to PKU  

This is a good way for school staff to gain a better understanding of PKU 

National Society of Phenylketonuria (NSPKU) Leaflet for teachers

The NSPKU provide a leaflet for teachers which can be downloaded. This gives an overview of the disorder in more detail if requested. 

Information for Caregivers 

This 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. 

What To DiscussWith Teachers 

This provides a checklist of discussion points you can use to go through with school staff. 

• Recapping on foods which are permitted to include throughout the day and foods which should be avoided. 
• Remind your child to leave uneaten foods/drinks in their lunch box to help keep a record of their daily protein intake. 
• Explain why it is important not to swap foods/drinks with friends. 
• Plan when and where to take their protein substitutes. 
• How to explain PKU and their low protein diet to other children if they are asked. 
• Give them positive messages that their diet is special to keep them happy and healthy. 

Protein substitute 

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.  

Keep cool!  

If your child prefers, use an ice pack or cool pack to keep the protein substitute chilled in their lunchbox until lunch time.  

Lunchbox and snacks ideas  

We have provided a week’s low protein lunchbox ideas.  

^{* Please refer to labels for allergen and other product information.}

• Koko Dairy Free Strawberry Yogurt Alternative (125g pot - 1 exchange)
• Sweetcorn (35g - 1 exchange)
• Peas (25g – 1 exchange)
• 1 x Rice Cake Caramel flavour (13g – 1 exchange)
• Coco pops snack bar (20g – 1 exchange)
• Quavers (16g bag - 1/2 exchange)

Please refer to labels for allergen and other product information.

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 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.

Request notice

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.

Sharing food

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.