Staying away from home and changing your usual routine, will always bring new challenges. This is no different if you have PKU. There may be a host of unfamiliar foods that you don’t 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. You might also be getting to the age where you are sleeping over at friend’s houses or are going on more overnight school trips and are starting to take on more responsibility for managing your own diet. Here are a few hints and tips to make sure that your trip goes smoothly:
Before you go:
Ask your dietitian for advice about managing your 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 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 others 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.
Things to take with you:
Ask for a letter on headed paper from your dietitian or GP to confirm that you are 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 phe exchange values of local products. It may also be helpful to take portable electronic scales with you to weigh out phe 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 e.g. your 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.
Travelling with a protein substitute:
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 luggage.
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.
All inclusive, à la carte or self-catering?
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 you. Often the chefs are most willing to help 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 you 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 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.
For more information about travelling with PKU, click here.
If you are going on a trip with school or staying over at a friend’s house, it can be hard to remember to take your protein substitutes and manage your own diet. Getting used to doing this when you are away from home will help grow your confidence in managing your own PKU diet in the future.
There are a few things that you and your parents can do to make sure this goes as smoothly as possible:
Let your friends and whoever is supervising your trip know that you have PKU and give them a brief overview about how your diet is managed so that they know why you are taking protein substitutes and following a special low protein diet.
If you are going on an organised school trip, ask for a menu of their meals in advance so that you can make sure you can have something similar. This will also help to ensure you pack enough low protein foods for the trip.
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 so that they can do this.
If you are going to a friend’s house, check with their parents or carers what they are planning on preparing for dinner and breakfast so that you can bring low protein alternatives or suggestions on how to make the meals suitable for your diet.
Ensure you pack plenty of low protein snacks in case you get hungry and suitable foods aren’t readily available.
Don’t forget to pack your protein substitute and set yourself alarms on your phone so that you don’t forget to take them at the right times.
The most important thing to remember is that going away should be fun, so please don’t be worried about it. If you follow our advice, your trip is sure to go well. Have fun and bon voyage!