Traveling in Europe

By Mary DeLateur, Spokane, WA

For the plane trip, I packed rice cakes and small snack boxes of cold cereal, besides fruit snacks. Our travel agent forgot to order the strict vegetarian meal for our son with PKU, Tony, age 16, but we were able to give him veggies from our plates.

Going through customs in various countries was a "non-event." We were almost disappointed that no one even questioned our white powder in plastic bags. We were armed with an "official prescription" from our clinic doctor, Dr. Ron Scott, as well as a letter written in French and in English describing PKU. Our bags were never opened at Customs. They took one look at us as a family travelling and waved us on through.

We brought along two 1-quart plastic bottles that did not leak. We fashioned a funnel out of whatever paper was on hand and poured half the powdered formula in each bottle, added water gradually and shook the bottles. It worked. We also brought along a 1-quart thermos. Tony would drink one quart for breakfast and pour the rest of the formula in the thermos if we were traveling that day.

We did have problems with the PKU formula. We packed the Phenyl-Free in Ziploc bags to reduce its weight and bulk. We started transferring the formula from the cartons to Ziploc bags a good week before we left. I thought it was one job that did not need to be left to the last minute. About a week into our trip, Tony started complaining about the taste of the formula. At the time, we were in Corsica and were storing the bags of formula in the carry-on luggage at room temperature, which was in the low 80's F. We thought it might have been the local water, so we switched to bottled water but the flavor was still "off." We began to wonder if we got a "bad batch" from Mead Johnson, but we still hoped that the next day's formula would be OK. It wasn’t. So, we opened up the only carton we packed, which we had saved for curious custom officials, and made it up. It tasted normal. We then realized that the formula had gone "bad," but we didn’t know exactly why or how.

We knew we would be in England in two more days, so we simply decided that Tony needed to drink the "off" formula until we got to England and could perhaps buy some new Phenyl-Free. Thankfully, I brought with me telephone numbers of the PKU Society in England. They were very helpful, and put me in contact with a nutritionist and with Scientific Hospital Supplies, the only supplier of PKU formula in England. We found out that Phenyl-Free is not available in England and that teenagers with classic PKU in England drink Maxamum. We phoned our PKU nutritionist, Cris Trahms, with all the information and she guessed that because there are about 30 grams of fat in each can of Phenyl-Free, it probably went rancid in the heat. We agreed that the best solution in this difficult situation was to switch to Maxamum.

I so admire Tony for his "can do" attitude. Because the Maxamum tastes so different from what Tony is used to, he had a very hard time drinking it. Cris was concerned that he would be hungrier because Maxamum only contains the essential amino acids and no other vitamins, and fewer calories than Phenyl-Free. She suggested he stick to big fruit salads to keep his blood level at the acceptable range. However, she was assuming we were always eating out, but we were staying in private homes for several nights. I was able to cook low protein pasta to fill him up.

Tony had a bad summer cold at the beginning of the trip, which seemed to be going away, but he had a relapse the last part of the trip. Maybe his whole immune system was lowered because of the huge change in diet. He was happy to switch back to Phenyl-Free when we returned home. There is a silver lining in every cloud. I haven't heard him complain once about the taste of Phenyl-Free since our return.

France is a great place to be a vegetarian. Tony loved the variation in the "chef salads" he'd order for lunch. It had a bed of lettuce, some boiled white potatoes thinly sliced, shredded carrots, tomato wedges, a sprinkling of corn and vinaigrette dressing. For dinner he would order a plate of steamed vegetables. Of course, there was always the "pommes frites" (French fries).

We were fortunate to stay with friends for two-thirds of our trip, so I had the opportunity to cook a good deal of the time. We brought along some pancake mix, as well as single servings of low-pro spaghetti and pizza crust mix in Ziploc bags. While we were in France I bought some cheese-free pasta sauce made in Italy named "De Rica - Sauce Tradition" with tomatoes and onions.

I also packed a few servings of a PKU version of "Rice a Roni," which was a mixture of low-pro rice and low-pro spaghetti, broken into half-inch pieces. We sautéed this in butter with some George Washington broth added to it. Tony didn't like the "Rice a Roni," very much. I had introduced it to him shortly before we left because I wanted to give him some variety. But the truth is, he loves his spaghetti and pizzas and so why fix what ain't broke!? Besides, when travelling, everything is so new and different, that eating his home favorites of spaghetti and pizza was probably comforting.

We had the wonderful good fortune to be the guests of a very special family in Belgium, with two older children with PKU. Our hosts were so generous to invite us to stay at their home (all five of us!) and be our tour guide to lovely Brugges and Ghent and the surrounding area. We "met" the family via the PKU Listserv. Their daughter is in her early twenties and is studying to be a PKU nutritionist. She is a strong advocate for people with PKU and was a veritable fountain of information for Tony. She is so confident in her ability to handle her diet. We went to two different buffet-style restaurants for dinner during our stay, and she piled her plate high with fruits and vegetables. She was a great role model.

The son is barely a year older than our Tony, who is almost 16. They seemed to connect with each other. Perhaps it was the evening motorcycle ride they took. Besides having PKU, Tony's new Belgian friend was diagnosed with diabetes a few years ago. His diet is very rigid because he has to watch when he eats, as well as what he eats. He handles it very well, and I think Tony benefited greatly from his example.

Spending time with a PKU family in Belgium was a very positive experience. I would certainly encourage people with PKU to make the effort to connect with other people with PKU when traveling. I hope we were a source of encouragement for them too.

Obviously, it's best to transport the formula in the original vacuum-packed container. Tony drinks 1-1/3 cans daily, so for our 3-week trip we started with 32 cans’ worth of formula in Ziploc bags. We always had it in carry-on luggage. It was awfully heavy and the wheels on that suitcase broke a few times during the trip. I would have invested in a higher quality bag with heavy-duty wheels and in another one that we could have worn as a backpack.

We loved the "Grand European Tour" we took, but we did spend a lot of time traveling. The next time, I would opt to stay in one place and make small side trips. There are some organizations that you can join and swap homes with European families. We met two families that have done this on a regular basis and have had great success.

I had believed that if I tried hard enough and thought through all the possible extenuating circumstances, then PKU wouldn't have to limit our family plans. However, we learned that vagabond travelling was a lot of work and was too stressful to be fully enjoyable. We think that the best way to do it is to go someplace and establish a home base. That way, we can carry-on all the formula but then leave it in one place and avoid having to lug it around.

I would not have opted to ship the formula ahead of us to Europe, although we did research the possibility. We decided that the custom fees are prohibitive, as are the shipping charges. (I covered this in a general letter to the PKU Listserv before we left in July.)

When I asked Tony what he thought about the trip, his answer had nothing to do with food. Even with our problems with the formula, the diet did not eclipse the fun and excitement of traveling. It was just one detail that did not work well for us. His answer made it worth all the effort.