Food usually in my suitcase to check is low protein pasta, rice, cereal, crackers, veggie broth cubes, Molly Mcbutter, cassava chips, fruit snacks, vegan jello, formula, pancake mix, frozen bread dough, sometimes its baked(cook for love recipe, see link below), glutino pretzels, lo pro cheese(sandwich mate, or follow your heart, vegan cheese) biscoft, fake egg mix and of course a scale!
Typically I have a soft cooler inside my suitcase so on the morning of the flight I put anything frozen into it with some frozen cooler packs. I also have a soft cooler that I carry on. I have her formula made for the day as well as any food for her during our travels. I also carry on an extra can of formula, just in case.
Also inside my suitcase and my carry on is a medical letter from children's hospital if there needs to be any explanation. Some foods we have found in airports that are ok for her to eat are french fries, at Starbucks they carry pouches, freeze dried fruit and fresh fruit. Many restaurants will serve steamed veggie sides.
Before I leave I Google where the nearest Whole Foods or a store similar is located and try to make that a must hit ASAP, or I ask a family member to do it for us. I have so many to thank for doing that! Many of our travels have been to a city so there was a Whole Foods nearby. But last October there was not one so I had to trust a family member to do the shopping, one who never hangs out with us, the results were doable. The main reason why I prefer Whole Foods is because of it predictability in what they carry, for example, gluten free pretzels, the milk I use in her formula, so delicious coconut yogurt, Annie's fruit snacks,(they have no gelatin) coconut/and or rice milk, butter, sauerkraut, pickles. Plus I like the selection of organic fruits and veggies. But King Soopers or affiliate stores are pretty good.(and cheaper!)
I have also had food mailed to the place we were visiting. Unless you are staying longer than a week I would not recommend this option. Most of our travels have been to friends or family residence but a few times we were not so I recommend staying at a place with a kitchen, which with kids is just crazy not to!
One other thing that I have always done is have a way to contact fellow PKU Moms. I am a member of a Facebook page with lots of Momma's and I also have a local Mom I have called(thanks Michelle!). The reason for this is sometimes I cant find a certain brand, of say fruit snacks, I need someone to look in our Low Protein food 'bible' and tell me what brand to buy and how much phe per gram so I can calculate it.
There has been one time while staying in Florida by John's Crossing that I had a package meal of lo pro mac n cheese and I asked the manager at a restaurant to make it for me and explained a little why, but I didnt go into detail. It was a total mess, she argued with me about not being able to boil water, so I told her to microwave it.When she brought it out she told me it ruined her microwave and she would never do it again. Then she tried to tell me she was a nurse and that there was chicken in the food I was about to feed my two year old and that I really should feed her fish. I was so stunned that I think my jaw hit the ground. I wish I would have walked out right then and there. The name of the restaurant is Walts. Just to be clear, there was chicken fat in the meal, fat does not have protein in it, but the smart nurse didnt know that.
So that is a few things I have learned along the way, anyone have any tips to add? I have not done international travel so when that happens I'll let you know
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