College Bound? Our Experience Dealing with the Diet

By Laurie Russ, parent of a college freshman. Laurie shares her "success story" in setting up a system that works very well for her daughter.

I am the mom of an 18-year-old freshman daughter, attending college one hour from home. We began talking to the food service staff at her prospective colleges during the Open Houses. We briefly described PKU and the diet, and got their initial impressions about how they could handle this diet challenge. We got the business cards of the food service managers and eventually set up a meeting in the spring at the college that our daughter was leaning towards.

We brought the Low Protein Food List for PKU, cookbooks, formula, various low protein foods, a sample PKU diet record, and a brief write-up on PKU and the diet to the meeting. The food service manager had invited all of his staff. So that they could "put their heads together" and be creative. It was a wonderful experience. One of the managers said that he would buy a cookbook and scales for their use. They asked us to let them know which recipes our daughter liked from the cookbook and to write out additional recipes to share with them. They also asked us to develop two-week rotating menus that they could work with.

I eventually put together a 3-ring binder of information for the food service staff (and a copy for myself and my daughter). The first section contained the two-week menu. Section 2 was a chart indicating a recipe name, page in cookbook, serving size, amount of phe, and comments. Section 3 consisted of miscellaneous typed recipes (including the "recipe" for her formula). Section 4 was a "shopping list" of food items that would be needed for my daughter’s recipes (both from the grocery store and from low protein food vendors).

After I put this together (it took 4 months!), we met with the food service staff again, at the beginning of Freshman Orientation. Our insurance covers low protein foods and formulas, so it had been decided previously that we would provide the special low protein foods for the school’s use, and that they would get the other ingredients from the grocery store. They then chose the 14-meal plan for us to "purchase." (We were providing a lot of the ingredients in exchange for the preparation of her special meals.)

My daughter’s phe levels have actually improved since she went to college. She met with the food service staff by herself a few weeks into the semester and revised the menus to better suit her and their needs. We feel that she has found a home away from home and has a wonderful woman at the school who does the majority of her cooking. It is hard for me to compete when she comes home from school! My daughter also got a job at the school dining center; this helped her to get to know the staff better, and she sometimes gets to make some of her own recipes while she is working.

This has been a wonderful experience. Good communication and organization have been the key.