Travel & PKU
Reprinted from: Information Sheet, PKU Handbook, Australasian Society for Inborn Errors of Metabolism, 1996.
Having PKU does not mean that holidays should be restricted to locations which are close to home or your PKU clinic. With some forward planning and thinking there is no reason why a person with PKU can't take extended trips in a car or overseas.
To cover the possibility of some or all of your luggage being lost, carry double the amount of supplement you will need for the duration of your holiday and divide it between all suitcases and hand luggage. Make sure that you have enough of the supplement in your hand luggage to last a few days in case you arrive at your destination before your main luggage.
For convenience and easy access pre-weigh the supplement which will be needed during the trip and store it in snap top plastic bags.
When travelling outside Australia, always make the supplement up with uncarbonated bottled water. So long as the bottle is sealed you will have a clean, cold source of liquid which will minimise the risk of getting any infections. For babies this water should be boiled.
When travelling overseas make sure that you have a letter from your Doctor stating ALL of the products you will be travelling with and why, including special food items. Countries may vary as to an item being 'food' or 'medication' and this may pose a problem for its importation into the country if its medical necessity isn't explained officially. If you are travelling for an extended period of time you will need a special script from your Doctor to allow you to obtain extra supplies of your supplement.
Managing the PKU Diet
For long flights find out what meals will be served throughout the flight (for example one breakfast, one lunch, one light refreshment). Decide what your child would like for those meals and inform the airline of exactly what you want. Do not generalise as they may interpret this as being a 'Vegetarian Diet' which isn't suitable for PKU.
Take extra suitable foods in your hand luggage, though remember quarantine laws between Australian states and possibly other countries do not allow fresh food to be taken off the plane.
See the information sheet 'Eating Out' for managing this side of holiday eating.
Write to PKU Associations or clinics in the state or country you are going to visit, to find out what is available in the way of clinics and food supplies. Your PKU Clinic team may be able to provide you with names. Find out whether anyone else in you clinic has travelled overseas, they may have some more helpful hints.
A Medic Alert bracelet stating that you or your child has PKU is a good idea. This is internationally recognised.