More Tips on Visiting Disney World

By Ann Myles, mother of Christopher (7-pku) and Elizabeth (5-non), Darien, CT

We recently took a trip to Disney and wanted to share our experience. Disney goes out of their way to accommodate the dietary needs of PKU. Even though we ran into some small problems, we had a great experience. All of the chefs have the best of intentions and do as much as they can on their own. Some of the things we learned are:

• Plan in advance. We started discussing the menus with the chefs of each restaurant two weeks prior to our trip. However, this probably should be done a month in advance to allow for more back and forth communication (and for ordering food). They didn't let us know certain foods could not be purchased until after we arrived there. Luckily, we took nothing for granted and brought some ingredients with us.
  
  
• Be specific. When discussing the menus with the chefs, be specific about the ingredients and where they can be purchased. Some of the chefs assumed they could purchase the pastas or baking mix at local health food stores despite explaining that this is not possible.

The following are the restaurants that prepared meals for us:

Caribbean Beach Resort - We stayed at the Caribbean Beach Resort and spoke with Chef Eugene at the bakery (part of the food court). He agreed to prepare various bakery items during our stay. He tried to get a box of Wel-Plan Baking Mix but was unable to do so by the time we arrived. Luckily, we had our own. We met with him when we first arrived and talked with Christopher about what he would like. Christopher looked at the items in the bakery display and decided on blueberry muffins, cookies and cupcakes. Everyday before starting our day, Christopher chose from his selection of baked goods.

Wolf Gang Pucks - We ate a dinner here where the chef made a wonderful lo protein pizza. They asked that we bring our own ingredients. We brought in a box of the SHS baking mix and lo pro shredded cheese the day of our meal. A wonderful lo pro pizza was made and Christopher was even brought into the kitchen to meet the chef and thank him.

Coral Reef in Epcot Living Seas - By far the most pleasurable experience for us and for Christopher!! We spoke with Chef Mark who was great to deal with. We asked for a Lo Pro Vegetable Pot Pie that Christopher enjoys at home and chocolate cake for dessert. We faxed the recipe in advance but there was a problem getting the baking mix. We spoke with him the night before we were going to eat at the restaurant and he came to our hotel to pick up a box of the Wel Plan. When we arrived for lunch, he greeted us at our table and brought out a junior chef's jacket for Christopher to wear. He improvised on the potpie by making a calzone-like vegetable pocket. It was filled with carrots, potatoes and peas mixed with George Washington's sauce. Also, while we were waiting, he brought out a plate of carrots, cucumbers and celery (beautifully presented too!) For dessert, he improvised using the baking mix again and prepared a individual pound cake or angel food-like cake. He had small cups of individual fruits (melons, strawberries, pineapples) and a cup of a sugar-based creme that he made. He told Christopher he could make his own dessert. Christopher still talks about the meal we had there and the fact he could make his own dessert.

Mama Melrose in MGM - This is not as elaborate as the Coral Reef. We brought our own pasta at their request and they made macaroni and cheese out of Dietary Specialties Elbows and Med Diet Cheese powder. They also brought out a plate of carrots as an appetizer.

Cinderella's Castle in Magic Kingdom - We dealt with Michael Hoffman and asked for Macaroni and Cheese. He insisted on trying to purchase the ingredients. However, after we arrived for dinner he told us the only thing he was able to get was a rice and cheese meal at the health food store. The protein was way too high. Again, we had brought our own just in case. He felt terrible about it and spent a great deal of time with us learning about PKU. He asked Christopher what kind of vegetables he would like. Christopher asked for raw cucumbers and carrots. Even though they did not have them, he went to another restaurant in the Magic Kingdom to get them.

Hoop De Doo Revue - They made lo pro pasta, french fries and a plate of vegetables. For dessert they made a low pro strawberry shortcake (which was the same dessert that everyone had). We had to give them a box of baking mix as they couldn't get it.

Chef Mickeys Character Breakfast - They made wonderful pancakes for Chris and they offered to make other things as well! They also have a buffet, so there were fruits and other PKU-friendly foods as well.

It was such a great trip - for Christopher and for us!! Disney really does a wonderful job and we sent in a few emails to let them know that their chefs are just great. By the way, all of the PKU items were given to us at no charge.