Traveling with PKU Kids

Traveling with PKU Adds Some Challenges to Our Vacation

You may have read in other posts that my oldest two children have PKU. When Reagan was born with PKU it changed our world and how I have to think about food. When I was pregnant with Noah, Reagan’s dietician asked how I would feel about it if he had PKU as well. I was actually torn about this. On the one hand, I would not wish that on my child. On the other hand, there are things about it that are easier for me. So when Noah was born with PKU as well, at least I understood the food part.  Traveling with PKU, on the other hand, brings a whole different set of complications.

Since most places have limited foods that Reagan and Noah can eat, I pack a lot of their specialty foods to bring with us. (If you’re unfamiliar with the diet, I explain it in this post. It’s a low-protein diet.) Bringing food with us means extra things to pack (and fit) into the car and just about always bringing an ice chest since a lot of the specialty foods are frozen.

What We Brought

Here’s what I brought for a 4 day beach trip.

Now, the kids won’t eat all of this, but we’re bringing it along to have a few options that might be similar to what we eat. Their formula or “milk” is a must no matter where we go

In addition to packing food, we have to consider where to store it and prepare it. For this particular vacation, we opted for a hotel that has kitchenettes available. This allowed us the flexibility to be able to prepare food. As it turned out, we did not prepare as much food in the kitchen as we might have, but it did come in handy for making soup and pizza.

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Where Did We Eat Out

Finding appropriate food in restaurants is always a challenge when we travel or just when we go out at home. Our first night in Pismo, the whole family went out to celebrate my husband’s birthday. He chose one of our favorite Pismo spots, Brad’s. After briefly perusing and dismissing the kids menu (there is rarely ANYTHING on kids’ menus that PKU kids can eat), I was pleasantly surprised to find a veggie wrap that looked like it would fit the bill: lettuce, tomato, onion, cucumber, avocado and jalapeno wrapped in a tortilla with some balsamic vinegar and olive oil. Since they split the wrap, it was about 2 grams of protein each. Perfect! They also shared a side of fries and garden salad.

For breakfast, we brought Cambrooke’s Apple Breakfast bars and their favorite standby, a slice of bread with a slice of cheese (both from Cambrooke). This worked for us each day, except for one day that my father-in-law wanted to go out for breakfast. We went to Penny’s for breakfast on our second morning and the kids were able to order some homestyle potatoes and a beautiful bowl of fruit.

Afternoons were spent out on the beach. Due to the steep cliffs at Pismo Beach, no one wants to run up just for food, so we pack it. I brought along low-protein bread, “pea-not” butter, fruit snacks and applesauce. We never seemed to get around to an official lunchtime, but our snacks seemed to hold us over until dinner.

A Pismo Beach, the perennial favorite is clam chowder in a bread bowl. Obviously Reagan and Noah cannot have clam chowder or bread bowl. As an alternative, I made them “chicken” noodle soup, salad and french fries. The next night our family ordered pizza. Luckily I brought along some low-protein pizza for the kids.

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Special Treats

Another beach favorite is the classic Atlantic City creation Salt Water Taffy. It seems like just about every shop in Pismo makes this famous beach treat and they get pretty creative with their flavors (chicken & waffles anyone). So, is it PKU friendly? Yes! It does include butter, but the amount is so small for a fairly large amount and the protein content is minuscule. Hooray! Another thing that my children can have.

Nothing says summer quite like ice cream or frozen yogurt. Fortunately, Pismo Yogurt right near the pier offers a few dairy-free options including the famous Dole pineapple soft serve. Topped with fresh fruit and some sprinkles, I love that my kids can enjoy a summer treat just like any other kid.

If you are traveling with PKU kids, you may need to plan ahead. It takes a little effort and forethought, but your kids can have an amazing summer vacation just like any other kids.

 



13 thoughts on “Traveling with PKU Kids”

  • To be honest, I’ve never heard of this. I have two kiddos, one of which is dairy free, and her side affect is stomach aches and diarrhea, and sometimes wets her pants. You are doing a fabulous job finding three right foods! Good job momma!

  • Great job, mom, on taking care of your kiddos! I understand how frustrating it can be to have to bring everything and monitor everything in food/ environment, especially while trying to be as healthy as possible. I know many other moms dealing with this situation, or one similar, will be grateful for the advice and realness you bring to the situation.

  • I had to read your other post to find out more about this. Planning really is key! But, it’s good to know that doing that doesn’t put a damper on their fun 🤗

  • I can absolutely relate to having food restrictions and needs… I am diabetic and I constantly am surrounded by foods that I can not have and must bring my own.., on a side note…. I grew up in Pismo so seeing all your pics from the shops by the pier is making me homesick 🙂

    • We LOVE Pismo and go at least once a year. My husband is also diabetic, so the complete opposite of my kids! Sometimes I miss the carefree days of our 20s when we could throw stuff in a bag and leave the house in 20 minutes without a thought, but watching my kids explore the beach was just the best!

  • LOVE that you don’t settle for limitations bc of their diet and that you still live and give them a normal life. Just with some amendments to make sure their health is tip top. I think they will appreciate this now but also in the future when they’re older and understand more!

    • You’re the first person that’s even heard of it! It is a challenge, but we do what we have to for our kids, right?

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