Staying Away from Home (C)

There may be a host of unfamiliar foods that you may not know the exchange values for, this applies whether you are travelling within your own country, going abroad, or even just visiting friends and family. When travelling overseas, there are the added factors of potential language barriers and concerns around taking protein substitutes in your luggage to consider. 

Your child may also be getting to the age where they are starting to sleep over at friend’s houses or go on more overnight school trips. This can be an anxious but exciting time for you as a family, as your child starts to take more responsibility for their own diet.  

Before you go: 

• Ask your dietitian for advice about managing your child’s PKU on holiday and taking bloods. In some countries, such as USA, protein labelling laws may be different so you may need to discuss this with your dietitian in advance. 
• If possible, ask your nutrition companies’ home delivery service to send your child’s prescription directly to your accommodation.  
• If you are travelling by plane, contact the airline beforehand to book in any extra luggage that you may need for your protein substitutes and low protein foods. It is also a good idea to take suitable low protein meals and snacks on board. 
• Research where you are going online to see if they have any low protein foods available e.g. low protein cheese and if there are any vegan or vegetarian restaurants near where you are staying. There are also apps that you can download which will help you with this such as Happy Cow or VegGuide. 
• Familiarise yourself with the nearest supermarkets to buy low protein snacks and ingredients. 
• Make use of local PKU or vegan social media pages and ask other parents for any restaurant or food recommendations if they have been to your destination before. 
• Write a PKU packing checklist and make sure that you pack with plenty of time to spare to avoid forgetting anything. 
• Plan your first meal before you arrive in a new place so that you are not overwhelmed with all the choice.

• Ask for a letter on headed paper from your dietitian or GP to confirm that your child is following a special diet and may need additional luggage space. This letter will be valuable when travelling through customs with your protein substitute and low protein foods. 
• Make sure you take contact details for your dietitian and hospital in case there are any issues or questions whilst you’re away. 
• Find out the local hospital contact number in case of emergencies and the details of the nearest metabolic centre at your destination. 
• Take your exchange ready-reckoner with you so that you can calculate exchange values of local products. It may also be helpful to take portable electronic scales with you to weigh out exchanges. 
• Print off your travel insurance documents so you have all the information to hand if you need it whilst away. 
• Take a selection of food basics with you that travel well for example your child’s favourite cereals in small packs, low protein biscuits and crackers, pasta and low protein bread. 
• The National Society of Phenylketonuria (NSPKU) website has a handy list of relevant phrases in various languages that you can print off and take with you to avoid language barriers. Alternatively, you could try using Google Translate. 

• Calculate how much protein substitute you will need. Take at least 3 days’ supply in your hand luggage in case of any issues with lost or delayed baggage. 
• Take an extra supply of protein substitute in case of spillage or damaged packaging. 
• You may want to ask your dietitian about a powdered alternative to a ready-to-drink protein substitute. This will save a lot of weight in your luggage. We recommend you do this well in advance of your trip. 

• Before you go, if one isn’t already provided, ask the hotel if they can provide fridge space, to store liquid protein substitutes and low protein food. 
• Speak to the hotel chef when you get there and ask if the low protein foods can be prepared for your child. Often the chefs are most willing to help and enjoy making foods especially for your child. 
• If your holiday has an all-inclusive buffet, there is usually a good variety of permitted fruits, vegetables and salads on offer and there should always be something that your little one can eat. 
• If your holiday is à la carte, ring ahead and ask if they can email you the menu so that you can plan your child’s meals before you arrive. 
• If your holiday is self-catering, you will be able to buy low protein ingredients and cook yourself. Before you set off, ask your accommodation if they have all the cooking equipment that you will need. 
• If you are holidaying in the UK, you could prepare meals in advance, label them and take them along in a cooler bag. If you do this, check your accommodation has freezer access to store these meals. 

Empowering older children to take their protein substitutes on their own (with a little bit of supervision from an adult!) can put the building blocks in place to start to grow their independence in managing their PKU diet.  

There are, however, a few things that you can do to make sure this goes as smoothly as possible:

• Have a meeting with whoever will be supervising your child to explain PKU and how it is managed with a low protein diet. Taking along your Introduction to PKU may help with this. It may also help to print a copy of the dietary information from the NSPKU website to show what foods are allowed and what to avoid. 
• If you child is going on an organised school trip, ask for a menu of their meals in advance so that you can ensure your child will have similar foods for the trip and that you have packed enough low protein foods.  
• Make organisers aware in advance that they will be required to prepare low protein alternatives to meals and that you will provide specially manufactured foods such as low protein pasta and/or rice. 
• If they are going to a friend’s house, check with the parents or carers what they are planning on preparing for dinner and breakfast so that you can provide low protein alternatives or suggestions on how to make it suitable for your child’s diet.  
• Ensure you pack plenty of low protein snacks as your child may be doing a lot of extra activity and may be hungry. 
• Don’t forget to pack the protein substitute. Give it to the trip leader or friend’s parents who will be responsible for your child’s diet whilst away. If your child is older, give the protein substitutes directly to them and let the carers know that they should be taking them at certain times. Pack a little extra of their protein substitute in case of damage or accidents.  

Travelling provides wonderful opportunities and memories so plan carefully and all should go well. Happy travels!