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By Cindy O’Leary, mother of a 5 year-old daughter with PKU and 10 year-old son without PKU (originally posted to the PKU Listserv group)
I wanted to summarize details of our trip to Disney World since all of you were so supportive and gave such good tips when I asked for help. This is going to be quite a long posting, but I want to cover everything in as much detail as possible, because everyone was very detailed with their tips.
We flew to Orlando on Monday, July 24, and returned on Saturday, July 29. We rented a car and stayed at one of Marriott's Vacation Condos which was equipped with a full kitchen, and even had a blender which solved our formula dilemma. I am very happy and relieved to report that everything went really well with the diet. In fact it came pretty natural, just as it does here at home, and I really feel that this is in large part to all the support I received from this wonderful group!
We made a trip to the grocery store once we arrived and brought everything else we needed (including cereals, jelly, butter, etc.) We ate breakfast every morning in our room. We felt it was the easiest way to go. We served her a choice of two different cereals, and either a toasted slice of the wheat starch bread with jelly on it, or one of the home-style rolls (which I just warmed in the microwave and sprinkled a little cinnamon on top, and it became a "cinnamon roll" as Virginia Schuett suggests in her cookbook).
We made her lunch each day and carried it with us. We tried to vary it. One day we would make her a sandwich, using the wheat starch bread with peanut butter and jelly, and sometimes just jelly. The other days we would make the D.S. macaroni & cheese and serve it with one of her low-protein Home-style rolls. We put her sandwiches in a plastic sandwich bag, and then in a Rubbermaid container along with some Pepperidge Farm Goldfishes. We also carried the macaroni & cheese in a round Rubbermaid container and the roll in a smaller container. This all fit nicely in the backpack and we didn't have to worry about everything spilling!
The only thing that I regret is that I didn't pick up any pasta sauce at the grocery store, because I could have made her pasta with sauce. We usually didn't get out each day until shortly before lunch, so I am sure that the sauce would have kept, and she would have had a little more variety. I know that she missed her pasta.
We didn't have any of the restaurants prepare any low-protein foods or pasta dishes, because we really didn't plan ahead each day and basically decided where we were going when we got up. Next time we go I would like to do this. Some of you said that given enough notice many of the restaurants were willing to prepare anything that you requested.
You must call ahead (1-407-W-DISNEY) and speak with the "special needs department" where they have a staff nutritionist who will help arrange all your child's meals. The Disney policy is to request 48 hours notice of special diet requests, but some of you said that they will readily accept requests 24 hours ahead. You can call the WDW-DINE number and get the number of any specific restaurant on site to talk to a manager or chef (most of you said that they welcome a challenge to do something different and out of the ordinary).
One parent who has been going to Disney World for years reported that only one restaurant would not prepare any low-protein meals, and that was an Italian restaurant in EPCOT. All the other restaurants were more than willing. Some of them said that they would even go and purchase the low protein foods ahead of time and prepare them. I have not spoken to anyone who has had this done yet; most of you just provided unopened boxes of pasta for them, and some the restaurants just charge $3.00 for marinara sauce (which is reasonable) and some didn't charge anything for the sauce.
We just got Sarah French fries every night for dinner (she doesn't eat salad yet.) We carried along a Mott's single-serve applesauce that she had with her fries each night. For dessert she had candy, cotton candy (I bought some of this at my Grand Union store), Italian ice, snow balls, or ice pops.
Fresh fruit and vegetables, salads, and ice pops or Italian ice were not hard to find. Here are just some of the places that we were able to find these foods. In most of the stands in all of the parks we were able to find the Itzakadoozie pop by Nestle, which is a cherry, lime, orange & lemon ice pop that sold for $2.25. Sarah really enjoyed this as it is quite large and colorful! The Electric Umbrella in EPCOT served salad and fries. In MGM Studios by the Indiana Jones attraction there was a stand that sold Italian ice or snow balls, and also at the Backlot Express (the fast food spot by the Tower Hotel) there was fresh fruit and salads. In Downtown Disney (the shopping mall) by guest services & Toys Fantastic there is a stand that makes really delicious Italian ice offered in many different flavors! We ate in the rainforest cafe one night in the Animal Kingdom. This was a cute restaurant and the food was good, but they served and could only make the waffle fries. So we got French fries at McDonald's, which is located on the western edge of the Marketplace. They didn't have anything suitable for dessert so we skipped it that night. I'm sure that we could have found something, an ice pop or Italian ice at one of the stands and taken that in, but we just didn't think in advance as we decided to eat there on an impulse. Over all it wasn't hard to accommodate the diet, so we didn't have to waste any time worrying about it!
We had four full days to see as much as we could of Disney world. Naturally we didn't see everything I don't think that it's possible in one trip. We did see a little of each of the four theme parks: Epcot, Magic Kingdom, MGM Studios, and the Animal Kingdom. I'll just give you a quick run-down of some of our favorite attractions. I'm going to list them in order with our favorite parks listed first. I know that there were many good things that we didn't see.
To sum up our trip, we really had an excellent time. We brought "Birnbaum's Walt Disney World 2000 guide." I highly recommend it to everyone (it is done by employees of Disney and very good and accurate). Please take their advice. We did everything that they told you NOT to do. We left the park many nights at closing and I don't have to tell you how crowded it was; it took us forever to get out! We also went at one of the worst times of the year. The weather was SO hot, 95-100 degrees F. every day and humid. Luckily it rained Monday through Wednesday so that helped, but it didn't rain at all Thursday and Friday and if you have allergies it's impossible to breathe! It is also one of the most crowded, June through Labor Day. We waited 1 1/2 to 2 hours for each ride and attraction. Next time around we will go in the fall or winter when it's less crowded, not as hot and no long lines!
I don't think that at this point we would change anything, or do anything
different with the diet, just next time we'll call the special needs department
ahead and let some of the restaurants prepare some low protein pasta dishes.
I would like to reiterate my gratitude and appreciation for all the wonderful help and support the Listserv group has given us. It's because of this that we had the serenity and confidence to go enjoy ourselves and do the diet just as any other day! This was our first long-distance trip and now that we've accomplished this, I feel that we can do just about anything! I hope that this summary of our trip helps all of you as much as you have helped me and my family.