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Travelling with a PKU Baby or Toddler – part six: PKU or RESTRICTIVE DIET SPECIFIC TRAVEL CONCERNS

Travelling with a PKU or diet restricted baby or toddler comes with unique travel concerns. Here are a few tips to could make your journey a little friendlier.


When you have a PKU baby or toddler, you will be travelling with medical food and supplements so make yourself known to Customs Officers. Let them know you have medically required baggage and many will allow you to go through a ‘special needs’ queue.

However, be prepared that they may unpack your luggage and test your water or formula. Keeping things neat and tidy in your packing will make things easier when going through security.

If you are travelling with a baby carrier, some airports will have strollers or prams at security to help you handle your luggage and get through security screening. Others will have bassinets at these points too.

In most cases, the officers are there to help and are typically very accommodating to families. In fact, after years of travelling through many countries, both on my own and as a couple, we found that getting through security and customs with a baby was much faster.


If possible, look for hotel rooms with kitchenettes. We have stayed in a variety of hotel rooms with our PKU baby from the small designer room to the budget conscience but not so pretty suite. Hands down our best experiences always came when we had a kitchenette that was separate from the bedroom.

Europa House: photo courtesy of Mr. and Mrs. Smith. Go to or 0330 100 3180 to book.

A kitchenette will allow you to prepare and eat food at the hotel rather than searching out restaurants or take-always that cater to PKU diets. You can then do a shop when you’re out and about and bring it back with you. Many restaurants will also serve dinner later than the time your little one eats, especially if you’re still adjusting to the time difference. So having something at hand makes mealtimes much more enjoyable. It also allows for cleaning and sterilizing the bottles.

It also gives you and your partner a little bit of space away from the sleeping baby. Our funniest moment was when we all shared a tiny Japanese hotel room. My husband and I would hide in the toilet each night and have dinner while the little one slept peacefully in the room. The toilet became the hub of evening activity where we not only ate but also washed baby clothes, bottles, and travel gear. Thank goodness for the long TOTO toilets!

charlotteats tokyo toto


If you are looking for a hotel that caters specifically to families, then I recommend Smith & Family. The website was started by Designer Hotel reviewers Mr. and Mrs. Smith. This time they’ve focused on the family and have broken the search down into family-need specific as well as destination categories, so finding a hotel for your family is so easy. I find myself idly dreaming of holidays away with the family.

Matrinhal Beach Resort and Hotel: photo courtesy of Mr. and Mrs. Smith. Go to or 0330 100 3180 to book.

PKU FOOD & SUPPLEMENT PACKING (But still suitable for any baby or toddler.)

In general, there should be 3 types of carry-on bags for a PKU baby or toddler:

1 – LARGE / OVERHEAD (FOOD) – The large one with all the PKU food required for the trip. You won’t need to access this during the flight.

2 – SMALL / UNDER THE SEAT (MISC.) – This will most likely be your baby-bag and is filled with easy to access items such as nappies, wipes, baggies, change of clothes and toys.

3 – SMALL / UNDER THE SEAT (FOOD) – This is the bag with all the pre-arranged PKU food, formula, and supplements required for the flight only.

  • Make sure the water and formulas are separated. Many airports will either test the water or make you drink it at the security checkpoint.
  • Clearly write on the containers what the contents are and the measurements.
  • The water in the bottles should have been boiled. In this case a little water will evaporate or if the lid is not fully secured and so a bit of water may be missing when you’re ready to mix the bottle. Because of this, fill the bottle with a little more than your serving size.
  • Allow for an extra bottle or two than you normally give your baby. They will be dehydrated and will want more. Pace yourself with giving your baby more water than formula.

I mentioned in the PKU packing list that you should count on 1 extra piece of carry-on luggage just for PKU supplements (baby formula or drinks) and food; all of which should come in their original packaging.

Another tip is to pack packaged PKU or low protein food instead of homemade. This is only because it is more likely to make it through customs. You can always make a batch of homemade at your destination. If you are flying a small domestic flight, this might not be a problem, but check your destination airport to see their policies about bringing fruit and vegetables into their state.


With the baggage, I recommend that this be a large carry-on in order to hold everything. The original PKU formula tins are bulky and will need the space. Fill the gaps with other PKU foods, plastic bags, cutlery and the like. Try to optimize the space as much as possible.

Remember, Customs will go through this bag. So keep it tidy and easy to arrange.

In part five: ON THE PLANE, I discussed the difference between Overseas and Domestic carry-on sizes. Take this into consideration if you are doing multiple legs and pack an empty, foldable bag (or 2) to accommodate the possibility of needing to shuffle the contents around if the larger carry-on is not allowed to be stored on board. You might not find out that it does not fit until you are actually on the plane, so having these bags handy is important.


Before travelling, discuss with your clinic how often they want to test your PKU baby or toddler’s blood. In our case, the clinic wanted us to send the bloods weekly. This became an unexpected expense that we did not factor in. In some cities, the cost was more to ship back home than others. This was also because we chose to send the bloods back via Express Post. The important thing is to remain constant with the dates that you send the bloods.


Another important thing to set up with your clinic is an email exchange. We were in constant communication with the clinic during the first part of our trip until we were comfortable with the changes, such as jet lag and weather differences. (See our story about Running out of Supplements on an Overseas Holiday.)


Tokyo is such a great city to explore with babies and children. The people were so friendly and engaging with our little one, the city is clean and there are generally facilities that cater to nursing mothers and changing nappies. The Narita airport is hands down my favourite because it has a nominated family area, set away from the general congestion, where babies could crawl around and get the wiggles out while you prepared meals or bottles in a kitchenette space.

charlotteats tokyo gardens

When we stayed in Tokyo, we spent the first day anxiously looking for a convenience store that sold nappies. We went into every store in our neighbourhood waving around Charlotte’s last remaining nappy until we found one that had a baby section. (I’m sure we were not the first, nor the last family to do this.) Apart from nappies, we also found baby food so we decided to give it a go.

Not knowing the Japanese language, we bought a variety of baby food based on the graphical information on the packaging. The graphic design for Japanese baby food is utterly fantastic for people with allergies because depicts a little picture (prawn for seafood, egg for poultry, milk for dairy) and a cross over it explaining for which allergies the food would be suitable. Other packages had a little graphic image showing all the ingredients.

Based on this information, we bought a few packages, took them to our hotel and went on-line to determine the symbols for protein. It turned out all the food we bought had little to no protein and was therefore suitable for Charlotte. This experience elicited a sigh of relief from us her parents and a little cultural food exploration from Charlotte. Our little adventurer devoured her Japanese noodles and vegetables.


Since our trip to Tokyo, I have since found another amazing website, Tokyo Urban Baby, that helps to decipher Japanese baby food labels. Kate Neath who writes Tokyo Urban Baby is so knowledgeable and helpful with all things relating to babies and Japan. Her website is a must for anyone wanting to plan a trip or move to Japan with babies and toddlers.



I have to warn parents that you should do your research when it comes to foreign baby food and that the best way to avoid protein or other dietary restrictions is to cook your own food.

Excerpt taken from: Travelling with Allergies (& Dietary Requirements)

“In recent years, various geographic regions have instituted mandatory product labelling regulations and voluntary guidelines for manufacturers. These regulations encompass various combinations of food allergens such as celery, dairy, eggs, fish, gluten, milk, mustard, peanuts, sesame, shellfish, soy, sulphites, tree nuts and wheat to name a few. These food allergens and their derivatives are considered responsible for over 90% of allergic reactions on a worldwide basis.

[Still], based on the variances in labelling, I believe that it is best to avoid pre-packaged foods altogether when travelling in foreign countries.”

(An interview with Kim Koeller, President and CEO of Gluten Free Passport  with Suitcases & Strollers )

Castilian del Bosco: photo courtesy of Mr. and Mrs. Smith. Go to or 0330 100 3180 to book.


The topic of Dining out with PKU is more suited for older children. When travelling with PKU babies or toddlers, you can still easily bring your own food with you to a restaurant.

In saying that, you still need to be prepared. Carry small meals or foods that travel well and can be put together at the table, such as rice cakes or low protein bread and avocados or fruit with a skin.


When ordering food for your PKU baby or toddler, keep things simple. Order food that is not complicated or have a lot of ingredients. Ask your waiter to bring something specific that you know would be suitable. Also ask your waiter how they will prepare it. For example, do they use butter? Most restaurants are used to special diets and should accommodate you.


Another thing to help with the dining out stress is to bring a copy of the PKU counting protein table given to you by the clinic. We had our copy scanned and saved it on our phones so that it was always with us.

When we stayed with friends or family, we printed out a copy so that everyone was aware of what foods were allowed. It was a gentle reminder that everyone must be aware of her condition at all food-focused times; something that we consider normal but others do not.

charlotteats german beer2

The key to travelling with a PKU baby is to be prepared but also be relaxed. No two journeys will be the same, so if you can adapt to each experience as they come, you will be much more likely to enjoy your time with the family in a new environment.

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