Travelling with a Low Protein Diet

Adapted with thanks from the NSPKU leaflet ‘Travelling with PKU, Hints and Tips for a Happy Holiday’ (www.nspku.org)

Whether you are going away for a short local break or travelling abroad; with a little organisation and forward planning there is nothing to hold you back from having a great holiday whilst sticking to a low protein diet

Tips for the journey

Whether you are travelling by car, train or plane preparation is the key to a successful journey. Here are some useful tips:

  • Think about which mode of transport you are taking and how long it is likely to take. Prepare enough meals and snacks for the journey before you leave so that you don’t have to rely on purchasing food from shops and service stations whilst you travel
  • Always take extra! You may experience bad traffic or flight delays
  • Ensure that you have sturdy containers with a good seal to store meals and snacks, and any cutlery you need to eat them
  • Have your protein substitute/supplement/medicines within easy access and make sure you take plenty for the journey 
  • If you take a powder protein substitute or supplement, remember to pack a small covered beaker, spoon and bottle of water to make it up
  • It is a good idea to have a plan for the first meal when you arrive at your destination. Doing some research before you leave into what you hotel provides, and which restaurants and supermarkets are nearby can make all the difference

 

Holidaying close to home

Going to another destination in the UK or Ireland means that you won’t have a long haul flight to contend with, the language is the same, and you will have a good idea about the types of food available in the local shops and supermarkets. However, there are some key points to think about when heading off for a domestic trip:

Hotel

If you are staying in a hotel, you may want to contact them or your holiday provider in advance to find out information about the meals provided on site. They might also be able to help out with:

  • Storing low protein milk/protein substitute/supplements in a fridge
  • Storing frozen low protein prepared meals and reheating when needed
  • Cooking low protein foods e.g. pasta, rice
  • Modifying existing menu options in the restaurant. If they seem accommodating perhaps offer to provide some simple recipe ideas
  • Hotels which provide buffet style meals are a good option as they usually offer a wide selection of food options. 

 

Many hotels and guest houses can be very accommodating; don’t be afraid to ask in advance. They can only say no!

Self-catered accommodation

Many families find self-catering accommodation convenient as they have the option to prepare their own meals. Make sure that you call ahead to check what facilities are available for preparing, cooking and storing food.

Supply of prescribed products

Making sure that you have enough protein substitute/supplements and low protein manufactured foods to take away with you is a very important part of travelling with a low protein diet.

Home delivery provider – If you use a home delivery service such as Nutricia Homeward, they should be able to arrange for a delivery to another address in the UK. Contact your dietitian to arrange six weeks in advance.

GP – If you plan to take the products yourself, your GP may need to prescribe additional products to cover the duration of your holiday. You may need to ask for the next month’s prescription earlier than planned. If your child takes a protein substitute, you could speak to your dietitian about temporarily prescribing a powdered product to save you from carrying a suitcase full of liquids.

Emergency planning

For conditions that require an Emergency Regimen in times of illness, ensure that you know where the closest hospital is to your holiday destination that can provide the treatment that you might need. Make sure that you have all of your Emergency Regimen documentation with you, and all products needed for making up the recipe. If you need to use this on holiday, contact your specialist team immediately for advice.

Holidaying abroad

Taking a trip abroad is a special and exciting time for the family. Make sure you prepare with plenty of time to spare. At least eight weeks before you travel, contact:
Your dietitian – Ask your dietitian for a letter on headed paper listing all the products you are taking and why you need them. You will need this for customs or for any emergency treatment. It is advisable to make a couple of copies of this letter as you may be asked to send a copy to your airline or your travel insurance company. You should also carry the letter with you in your hand luggage in case you need to show customs to explain why you are carrying medical food or products in your hand luggage. If your child takes a protein substitute, you could speak to your dietitian about temporarily prescribing a powdered product to save you from carrying too many liquids.
Home delivery provider – If you use a home delivery service such as Nutricia Homeward, they may be able to arrange delivery for protein substitute or supplements to your destination. Contact them to discuss if this is an option.
GP – Your GP may need to prescribe additional products to cover the duration of your holiday. You may need to ask for the next month’s prescription earlier than planned.
Airline – If you are not using a delivery service, then you must contact the airline to enquire about extra baggage allowances (see ‘Advice for flying’ below). Think about how much low protein food, protein substitute or other products you will need to carry on board the flight, and calculate the weight of the full amount that you will need to check-in.
Hotel– Just like when you are holidaying closer to home, make sure that your contact your hotel or accommodation to find out about meals provided and/or facilities available. Many hotels offer all-inclusive packages providing plenty of fruit and vegetable options for meal times. Hotels which provide buffet style meals are a good option as they usually offer a wide selection of options.  

Emergency planning

For conditions that require an Emergency Regimen in times of illness, ensure that you know where the closest hospital is to your holiday destination that can provide the treatment you might need. Make sure that you have all of your Emergency Regimen documentation with you, and all products needed for making up the recipe. If you need to use this on holiday, contact your specialist team immediately for advice if possible from your destination.

Advice for flying

(Taken from the current government advice April 2013)

There are restrictions on what items you can take in your hand luggage and hold luggage when boarding a plane in the UK.

Hand luggage allowances

Check with your airline about how many and what size bags you can take on the plane with you.  

Taking liquids through security

There are restrictions on the amount of liquids you can take in your hand luggage. If possible, pack liquids in your checked luggage. However, it is likely that you will need to take some liquids in your hand luggage – especially if you are taking a longer flight.

Remember that:

  • Containers must hold no more than 100ml and must be placed in a clear plastic bag 
  • For information on infant formula please see the Babies and Infants section below
  • Essential medicines including liquid protein substitutes over 100ml can be taken through security but you must have the following:-
    • Approval from the airline
    • Supporting documentation from a relevant medical professional 
     
  • Remember to divide your protein substitute between bags just in case of any lost luggage
  • If packed meals have a high liquid content, bear in mind that your airline may impose volume restrictions

NOTE: We recommend that you contact the airline’s customer service department to notify them of your travel requirements and to find out what their policy is regarding travel with medical food. If using a travel agent they may be your first point of contact. Airline policies when travelling with medical food will differ so it is worth checking with a customer service representative before you travel.

Useful phrases

Check out ‘Travel Talk’ for a list of useful questions and phrases translated into different languages: French, German, Italian, Spanish, Portuguese, Dutch and Swedish.

Babies and infants

  • If your baby is taking a special infant formula (protein substitute or protein free), make sure you take enough to last you for the entire duration of your holiday (unless you have organised a delivery to your destination) plus a little extra to account for unforeseen delays or spillages
  • If you are not breastfeeding and using infant formula, take enough of this in sealed containers with you
  • Remember to take your bottles and sterilising equipment
  • Check that your hotel or accommodation has appropriate facilities for making up feeds, e.g. a kettle or a container for sterilising bottles
  • Make sure you take plenty of foods that your baby likes. Remember to take with you an up to date baby food list if you have been given one by your dietitian. All baby jars are allowed freely if they have less than 0.5 grams of protein in 100 grams
  • When abroad you will need to boil water. Do not use tap water.

Air travel with your baby

If you’re taking a flight with a baby you’re allowed to take enough baby food, formula and sterilised water for the journey. The sterilised water must be kept in baby bottles. In some cases this may be over 100ml, but the adult carrying the baby food or milk may be asked to taste it. Make sure that you have the customs letter from your dietitian with you.

Children, teenagers and adults

Some useful tips to remember:

  • Anything with protein content of up to 0.3 grams protein per 100 grams can be taken freely 
  • Be wary in countries with limited food labelling regulations, and those which have a different format. E.g. America and some other countries will give per serving information and not per 100g. Always check every label
  • If you are old enough to drink alcohol, be aware of the protein content of various options (and aspartame content for PKU). Speak to your dietitian for more information 
  • For PKU: be aware of soft drinks that might contain aspartame. Labelling may be different in other countries and may not show the phenylalanine warning

School/group trips

Going away on a school trip plays a great part in confidence building for your child. With careful preparation and planning everything can go smoothly. Ensure that you speak to the organisers of the trip well in advance to clarify the following information:

  • The dates of the trip 
  • The name and details of any accommodation
  • How they are going to be catered for, and what food preparation facilities are available 
  • A named member of staff from the school/group who is capable of managing your child’s low protein diet and is aware of any emergency protocols if appropriate. Especially if you are not planning on attending. 

Contact your dietitian if you need help with preparing for the school trip.

Blood levels

If you need to take regular blood spot tests to monitor your condition, you will need to take your blood taking equipment on holiday. Remember to pack: 

  • Lancets 
  • Blood forms
  • Envelopes with lab address

If you are on holiday in the UK you should take your blood sample and post it in the usual way. If you are on holiday abroad, discuss level taking with your dietitian.

NOTE: you will need to provide the dietitians with a contact phone number or other mode of contact so that they can report blood results to you.

Illness on holiday

If an Emergency Regimen is not needed during times of illness – illness should be treated in the same way as with anybody else. Take appropriate medicines with you as a precaution. If purchasing medicines abroad make sure you tell the pharmacist that your child has a metabolic condition and what it is. Speak to your GP/dietitian about any specific advice.

As mentioned above – if an Emergency Regimen is needed it is important to check where the closest hospital is to your destination, and that they have appropriate facilities should the need arise. You also need to take all your documentation and products needed for the Emergency Regimen. Speak to your specialist team before you leave to make sure that you are prepared.

Insurance

Within the European Union you are entitled to reduced cost or free emergency medical treatment if you have an EHIC card. You can get these by calling 0300 3301350 or visiting www.ehic.org.uk

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You are also advised to take out a comprehensive insurance for travel abroad. Ask your travel agent for more information on this. 

Item checklist

  • Your specialist team’s contact details 
  • Mobile phone and charger
  • Protein substitute or protein free supplement – enough packed in suitcase and five days worth in hand luggage
  • Low protein foods e.g. LP breads, LP rice, LP pasta, LP biscuits, LP cakes, LP milk replacement 
  • Containers and spoons to mix protein substitutes or supplements if using powder
  • Baby bottles and sterilising equipment if you are feeding infant formula
  • Diet information – exchange calculator, diet sheets, recipes 
  • Electronic scales – with newly replaced batteries, or appropriate measures to accurately calculate exchanges 
  • Suitable medicines
  • Accessories – sandwich bags, measuring jugs, small bowl for scales, cool bag, ice packs
  • Useful supermarket foods that you may not be able to get at your destination

If travelling abroad:

  • Letter from the hospital for customs  
  • Passport
  • EHIC card (if travelling within European Union)
  • Translations – useful questions and phrases translated into the language of your holiday destination. See Travel Talk

If need an Emergency Regimen in times of illness:

  • Emergency Regimen documentation and ingredients to make up the recipe  
  • Local hospital contact numbers

If need to take blood test regularly to monitor levels:

  • Lancets 
  • Blood forms
  • Envelopes with lab address

Please Note: The information provided on this page is for guidance purposes only and is in no way intended to replace the care, advice and medical supervision of your healthcare professional. If you have any questions about the information provided here, please speak to your doctor or dietitian.

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