So many times I see in PKU groups people asking about how they can vacation with someone who has PKU. I have seen some parents say they use won’t do it because it sees to hard. I have seen others who have said they tried vacation here or there and it was a disaster, and while it can be a disaster the main thing to remember is preparation.
Honestly, we vacation all the time. We have never let PKU hold us back from going places and sharing wonderful experiences with our children. The key to remember is that it does take a little bit more preparation, but once the initial preparation is done it usually isn’t that difficult. We have traveled with our girls to
One of the biggest things we found to be extremely helpful is finding hotels that have kitchens. When you have a hotel with a kitchen you can bring along low protein foods and easily cook them. If you are someone who has a very limited phe intake this is often the best option because you can more easily control the diet. The big question with doing something like this is “how do I transport that much food?” One thing to think about is: do you have to transport everything? For example, are there some things you could buy at the grocery store once you arrive at your destination? I know it isn’t always easy to find speciality items like low protein pasta or baking mixes in most stores so those items you would need to bring along. If you are driving it is easy to pack.....if you are flying then you can either see if you can mail the food to your destination before you get there (always make sure it arrives before you leave so you aren’t stranded without food), or you can consider carrying on some low protein foods and checking another bag with food.
One huge consideration with traveling is formula. This can be a tough one. In our case, we have always traveled with unopened cans of formula with a note from our physician with no problems. They will pull the bag, and ask whose bag it is. In our case we never wanted to put that on our children, so my husband always carried through the formula. They would open the bag, swab the unopened formula containers and send us on our way. Because they always pull the bag you might want to remember to arrive at the airport with enough time for this to happen.
- Florida many times......visiting Disney, and Sea World
- Hawaii a couple of times......doing Luau’s, visiting Ranch’s, Sea Life Park, and many other adventures
- Grand Cayman
- Mount Rushmore
- Grand Canyon
- Traveled to several Six Flags for one vacation
- And then spent time in many states such as: Illinois, Michigan, Minnesota, North Dakota, South Dakota, Ohio, North Carolina, South Carolina, Alabama, California, and many other states
I could go on and on, but you get the idea.
One of the biggest things we found to be extremely helpful is finding hotels that have kitchens. When you have a hotel with a kitchen you can bring along low protein foods and easily cook them. If you are someone who has a very limited phe intake this is often the best option because you can more easily control the diet. The big question with doing something like this is “how do I transport that much food?” One thing to think about is: do you have to transport everything? For example, are there some things you could buy at the grocery store once you arrive at your destination? I know it isn’t always easy to find speciality items like low protein pasta or baking mixes in most stores so those items you would need to bring along. If you are driving it is easy to pack.....if you are flying then you can either see if you can mail the food to your destination before you get there (always make sure it arrives before you leave so you aren’t stranded without food), or you can consider carrying on some low protein foods and checking another bag with food. In our house when traveling and checking bags with food in them I always worried about the potential that it would get lost, so my trick to this is to pack extra food and divide it up among several bags (for example, some food in my husband’s checked bag, some in mine, some in my child’s, etc). By doing it this way if one bag does (unfortunately) get lost you will still have food with you.
Another thing to consider is whether or not your destination will have access to and/or provides low protein food. For example, Disney does offer some low protein foods so you could make arrangements with them prior to your vacation.
When taking cruises we have always contacted the cruise line before we traveled and explained our needs. They will most likely not have a clue what you are talking about, so we would explain our needs:
- Asking if we can bring uncooked low protein pasta and have them cook it
- Ask for a refrigerator in your room to store items that might need to stay cold
- Ask for items that they regularly serve on their menu to see what items the person with PKU might already eat (i.e. fruits and veggies, etc)
- Ask if you can connect with the chef once you are on the cruise to explain your needs
When we have done these things we have had amazing outcomes. I will never forget the first cruise with took with our daughters who have PKU. The chef was so amazing....we met with him the first day to explain our needs. At our first dinner he personally brought out our girls’ dinners and presented them to the girls, and asked if everything was as we needed it to be. He had arranged their veggies so beautifully on their plates, and even offered to help cut it up for our girls. We also discussed our needs with our head waiter prior to our first meal so that he knew our needs as well. Because we always had our sit down dinners with the same wait staff they knew us and did an excellent job assisting us. Some meals we didn’t have specially made because we saw there were veggie options, so we would ask to have one veggie from one type of meal option and another veggie from another meal option and they were always wonderful with accommodating.
One huge consideration with traveling is formula. This can be a tough one. In our case, we have always traveled with unopened cans of formula with a note from our physician with no problems. They will pull the bag, and ask whose bag it is. In our case we never wanted to put that on our children, so my husband always carried through the formula. They would open the bag, swab the unopened formula containers and send us on our way. Because they always pull the bag you might want to remember to arrive at the airport with enough time for this to happen. 
Overall, we have had some amazing vacations and while traveling with PKU can mean slightly more preparation and planning it has never held us back!!!
About the author: Michelle Hardy currently lives in Wisconsin and is the mother to nine children (3 with PKU), and a grandmother. If you would like to contact Michelle directly you can email her at michelle.d.hardy@gmail.com
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