Tips for Diet Management from PKU Families

• When I travel I bring along a small computer/personal organizer that has entered into it my son's favorite foods and their exchanges. It also carries phone numbers (for example, for the clinic) and any other data I want. It is small (just larger than a credit card) and convenient.

• Make a "master travel list" for trips on your computer. It has saved us much time while helping us remember favorites and necessities. Make copies for each trip and individualize as necessary. We include camping supplies and a shopping list on the travel list. Also include foods to buy when you arrive at your destination.

• When travelling, I use a small 2 x 3" spiral notebook. In it I make a list of things I need to pack. It stays essentially the same each trip. I have a mini food list (one page per food group). I also write the recipe for the formula (we have four different ingredients to worry about).

• If you need to carry a paring knife with you on a trip, I found a handy and safe way to carry it: in a plastic travel-type toothbrush case. Works great!

• Staying in a condo or hotel with a refrigerator makes life so much easier.

• The Braun hand blender is an easy-to-travel-with mixer. It will fit into a plastic "fun meal" cup from McDonald's for mixing the formula.

• For making formula when you travel, a whisk works great with a large plastic Dixie cup, too. Just dispose of the cup afterwards. This also works well in restaurants.

• For children who like to drink their formula through a straw, carry extras in the glove compartment of your car.

• Prepare formula with spring water (bottled), especially for young children. Since water tastes differently from place to place, it will have an effect on the taste of the formula. Using spring water will avoid taste changes that come from such things as more or less chlorine in the water.

• Always travel with a "food box" filled with snacks of fruit, chips (like apple chips or Havana Cafe chips from MenuDirect, or low protein pretzels from Uncle Henry's Pretzels), fun fruits, etc.

• If a special brand of a product is important, bring some along on your trip. You cannot count on it being available in all parts of the country.

• Most kids enjoy "snack pack" cereals on a trip.

• Foods that families find easy to travel with: Fruit roll-ups, string candy (licorice), apples, apple chips, dried apple rings, hard candy, Smarties candies, Skittles and Starburt candies, tootsie rolls, lollipops, low protein cookies, sun-dried fruit, fruit snacks (Shark Bites, etc.) snack pack fruits (applesauce, etc.), puffed rice "gorp" (puffed rice, raisins, dried fruit, chocolate chips), low protein crackers, craisins (dried cranberries), marshmallows, Wise Onion Rings (from MenuDirect), Hunt's Lemon Snack Pack Pudding, canned juices.

• Cut carrot sticks, celery sticks, cucumber slices, and bell peppers and put in zip lock bags for a neat, healthy snack when traveling.

• Bread machine "mix" (from MenuDirect or your own homemade) is great when travelling to grandma and grandpa's house (luckily they have a bread machine). We pre-measure the mix or dry bread ingredients and then just add water when we want fresh bread during our visit.

• Cream of Rice mixed with low protein porridge makes a good microwave breakfast or snack. I bring some Ziploc plastic bags with a mixture of these things and add brown sugar and butter. Just buy non-dairy creamer to mix in.

• Bring "pre-mixes" of things like pancakes (Master Mix Pancakes, p. 298, Low Protein Cookery for PKU) and pizza dough in Ziploc bags with instructions printed on the outside of the bag using a marker.

• We use lots of coolers. A very small (6-pack) size cooler is easy to take anywhere to keep formula cold.

• The newer 20 oz. plastic bottles of pop are terrific for travel; just re-close to seal unfinished drink. Great for those who mix formula with pop!

• Rinse empty Phenyl-Free cans for conveniently storing pancake mix, pizza mix or snacks that you don't want crushed in a backpack or while traveling.

• Pre-measure formula in Ziploc bags. Also carry an extra can in the trunk of the car.

• Pre-measure mix for pizza dough and take a copy of the recipe to make once you arrive at your destination (with kitchen).

• Pre-measure low protein porridge with cinnamon and sugar for microwave in "snack bags" (Ziploc bags).

• Make certain when booking airline reservations that you ask for a special diet (you can usually get a great fruit plate). Also, ask for a refrigerator in your hotel room. Many times they will not charge if it's for a special dietary need.

• Bring low pro pasta with Italian dressing for cookouts and church potluck dinners. Coleslaw, vegetable shish kebabs and veggie burgers are good choices where you definitely want to be prepared.

• When we travel, we try to stop at Wendy's so our daughter can have fruit and a potato instead of french fries all the time.

• For movies, instead of taking a measuring cup, take a Dixie drink cup for popcorn. It measures 1/2 cup.

• If you go on a day trip, partially freeze your child's milk so it will remain cold much longer.

• Keep a "care package" in the trunk of your car with foods that won't go bad, so if you are unexpectedly invited to stay for lunch or dinner at a friend's house you are prepared.

• When flying, never trust the airlines to give your child that special vegetarian meal or fruit plate you ordered and confirmed two days prior to departure. Always be prepared by bringing plenty of food and "milk" with you and never have it checked; always carry it with you.

• For breakfast when traveling, take along plenty of Ziploc bags filled with frozen low pro bread, bagels, English muffins, rolls, waffles in a cooler. They keep well for 4-5 days if refrigerated. Restaurants will usually gladly toast or microwave food for your child.

• For lunch, purchase fresh fruit at a local supermarket to have in the car. Take along carrot muffins, applesauce muffins, dry cereals, dried fruit and cut up raw vegetables. All are filling and easy to take on the go.

• For dinners, go to a restaurant with a salad bar. It makes kids feel like they get to choose something special. We usually allow my son to have French fries or a baked potato when dining out. If diet for the day has been too high, we take along dry low pro pasta or rice and ask the restaurant to boil and serve with tomato sauce or margarine. Most restaurants are more than willing to do this.

• When traveling, ask the hotel to place a microwave and refrigerator in your room for medical reasons. Most hotels charge $5-$10 per night for this service but waive the fee if it is for medical reasons. In our experience, no hotel has ever requested a physician's note for verification.

• Whenever we go to a hotel that does not have cooking facilities, I learned to brew my daughter's pasta in a coffee maker! I put one portion of tightly sealed pasta (in plastic bag) in the room's coffeepot and brew it right there in the coffer maker. It takes two cycles; first to take the chill off, and the second time around the noodles are hot and supple.

• Fix "trail mix" and keep in an airtight container in the car for trips around town as well as long excursions. Our son likes a trail mix of 1/4 cup Corn Pops cereal, 30 mini-marshmallows, 1 tablespoon raisins and 1/4 cup Post Honeycombs for a total of 49 mg phe. My son thinks this is great and even likes to help measure it for the Ziploc bags. You can experiment with substituting brightly colored cereals, dried fruits, etc. We still keep a supply of snacks such as Honeycomb cereal, raisins, snack-pack peaches and bubble gum in the car in case he needs something to eat while we are running errands.

Visiting Disney World

For many additional tips on travel to Disney World, go to the Personal Stories, see the collection of articles in Travel and the PKU Diet, and read Tips for Visiting Disney World.

• At Disney World in Florida, we stayed at Fort Wilderness in a trailer home, which is absolutely ideal for families, especially with someone on a diet. The trailer homes have full kitchens, and all the appliances are full size so any cooking or baking is a convenient as it is at home. (Also, many hotel chains now have suites with full kitchens.) Each night I put the plastic "blue ice" packs in the freezer to use the next day in an insulated bag. I made my daughter's formula at night so it would be as cold as possible, then in the early morning I put it in the freezer until we were ready to leave for a day at Disney World. Also, you could put a small thermos in the freezer at night for the next day. I brought along bread, and simply sliced and froze it at Fort Wilderness. I also brought my bread machine in the car and pre-measured ingredients for a loaf of bread in a Ziploc bag. I took small Tupperware bowls with pre-measured amount of pancake Master Mix, which was then ready to mix right in the bowl. I also brought a tiny container of oil that is needed to make the pancakes. I brought Ziploc bags with pre-measured formula powder, ready to mix with water.

• Disney has storage lockers in their theme parks for just a few dollars a day. Prepare lunch for the family and store in the locker until you need it.

• Freeze formula at night and put in cooler in the morning. By lunchtime, the formula will have thawed but will still be very cold, perfect for drinking.

• At Disney World, there are ice-cream carts everywhere, but all sell strawberry popsicles also.

• The restaurants in Disney World were mostly quite accommodating when we asked for special things, such as: a cucumber salad plate, or "fries-only" when they normally didn't serve side orders. Many restaurants and snack shops have fruit plates or fruit cups, which were very good.

• For our days at Disney World, pre-planned snacks were a must. I had many, packed in Ziploc bags or small Tupperware containers.

• Don't be afraid to ask restaurants if they could prepare something for your child if there is nothing on the menu that is appropriate. I have never had a restaurant refuse my requests. I have also taken low protein pasta to a restaurant (while on vacation) and asked if they would be able to cook some for my son. (They did, no problem.)

• Have your child eat low protein bread or a low protein dinner roll in the car on the way to a cookout or restaurant to curb his or her appetite.

• Eat out at "The Italian Oven" a fast-growing franchise located in Pennsylvania, Arizona, Delaware, Florida, Georgia, Indiana, Kentucky, Maryland, Mississippi, North Carolina, Ohio, South Carolina, Tennessee, Texas, Virginia, and West Virginia. It is excellent for PKU. For our six year-old son, we take cooked plain low protein spaghetti (in a throwaway plastic bowl). The restaurant will immerse the special serving for 10 seconds in boiling water and serve it on a beautiful plate with their fresh tomato sauce) on the side in a small bowl (approximately 4 tablespoon). They also have sorbet on the menu for dessert and a wonderful salad with fresh salad greens, cucumbers, Italian plum tomatoes, black olives, fresh mushrooms and Italian, Red Wine Vinegar, French or Olive Oil and Balsamic Vinegar salad dressing. They also offer a free assortment of baby foods from Gerber (applesauce, bananas and peaches, etc.) Kids also get to make a "pasta necklace" while waiting for food and get to drink out of a big pasta noodle "tube" for a straw.

• At McDonald's, ask for a side salad in place of the hamburger for a Happy Meal. We have found that sometimes they don't even charge for a substitution. Most of all, the child gets that prized TOY! We've also found that McDonald's will give an empty cake cup cone to our son when we explain that he can't eat frozen yogurt or ice cream. He is just as happy crunching on that empty cone and sipping ice water through a straw.

• You can also ask for a side order of black olives at Taco Bell and at steak restaurants, you can ask for grilled onions, sauteed mushrooms and salad.

• When eating out, take an envelope of Lipton tomato Cup-A-Soup. Various waitresses have always been happy to add 3/4 cup very warm water to make soup for our son. Other family members can then order regular soup or other appetizers.

• If you are ever surprised or confused about what is on a menu, don't be embarrassed to talk to the waitress about your child's diet needs. Once at small seafood restaurant, the waitress kept bringing cherry tomatoes, pickles and olives for our son because that was about the extent of their appropriate foods! Most of the time, with society's increased awareness for health eating, you won't have this problem, but it may happen if you travel extensively.

• Whenever we go out for pizza, I always take along a pizza crust for my daughter (I make pizza for her by using the recipe on the back of the Wel-Plan box). It is excellent and freezes well. I add sauce, and mushrooms or other veggies and the restaurants have always been wonderful about heating it up and serving when ours is done, no questions asked.

• Check out the vegetable platter at a Chinese restaurant, but check to see if chicken broth is used.

• Our favorite takeout Chinese restaurant now keeps a PKU recipe card posted in their kitchen, after a discussion with them about my son's diet needs. The card explains how to alter their own recipes for such favorites as Vegetable Mai-Fun, Broccoli & Straw Mushrooms and Sauteed Vegetables with ginger sauce. We no longer have to explain ourselves every time we call to place an order or eat in the restaurant. Now we just call and ask for the "PKU Mai Fun," etc. With each order they decrease the amount of regular white rice they normally serve on the side and replace the higher protein oranges they serve with a compote of lychee and cherries, and double the amount of Chinese tea bags. This also makes it much easier on our son (age 10) when he goes out to eat with friends, now that parent tagalongs are becoming taboo.

• Steamed Chinese vegetables with no snow peas or bean sprouts work well for us.

• I always order stir fry veggies, just tell them no beans, sauce or anything extra. Its really good and my kids love it.

• We usually order a vegetable dish with no tofu, bean curd or pea pods and we ask for white rice (In most restaurants it’s called "vegetable delight").

• We find that stir fries usually have egg in them. Our daughter usually orders steamed rice with vegetable (noting no tofu). Fried wontons are good if there is no meat in them. Mushrooms and carrots with measured steamed rice and soy sauce is good. Check the soy sauce for its brands as the phe level can vary widely.

• When we go to a local Chinese restaurant, our son always orders "Rainbow Vegetables." We cook his low protein rice at home and bring it with us.

• My son loves the chicken noodle soup. We take out the chicken and noodles and replace it with his spaghetti. It is the broth that has the good flavor anyway.

• My daughter's favorite Chinese dish is vegetable fried rice, no egg. It is a little high, because it has real rice in it, but it is a nice treat. Also, sweet and sour vegetables and egg-free spring rolls are good.

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