Travelling with PKU

• 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. Alternatively, you may be able to obtain a travel trunk which you can pack your protein substitutes and low protein foods into. 
• 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 when you arrive in a new place so that you are not overwhelmed with all of 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 along 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. 
• Be organised and 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 e.g. your favourite cereals in small packs, low protein biscuits and crackers, pasta, low protein bread. 
• The 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. 

• Carefully calculate how much protein substitute you will need. Take at least 3 days supply in your hand luggage in case of any issues. 
• Take 2 days 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. 

• Before you go, if one isn’t already provided, ask the hotel if they can provide a fridge, 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 out and enjoy making foods especially for you. 
• 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. Ask your accommodation if they have all of 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, make sure you ring ahead to ask for freezer access. 

• Have a meeting with the organisers to explain PKU and the how it is managed with a low protein diet. Taking along your ‘Introduction to PKU’ booklet 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. 
• Ask for the menu in advance so that you can ensure your child will have similar foods for the trip and will help you to ensure you pack 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. 
• 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 who will be responsible for your child’s diet whilst away.

Most of all - have fun and bon voyage!