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By Kaki Brenneman, Portland, OR
So your precious PKU'er is finishing high school and thinking about college. You're smart enough to know that most freshmen don't want mom to go to school with them, and you want them to realize their potential for independence. And in your heart of hearts, you're anxious for a break from PKU cooking. For 18 years you and your child have successfully managed the parties, school situations, overnighters, vacations, camps, and daily meals. Now, college looms ahead and the food situation represents uncharted water.
This is our story about getting our precious PKU'er the foods he needs at his college 1,000 miles from our home in Portland, Oregon. It's my hope that it also will give prospective college freshmen and their parents ideas on how to navigate the seas of the college culinary bureaucracy.
Charting our Course
After our son, Mark (whose story appears in the Winter 2003 issue), wowed Harvey Mudd College with his essay on his decision to strictly follow the PKU diet, we began to chart our course to make the dining hall in Claremont, California PKU-friendly. Before Mark went to the admitted students' weekend in April, we contacted the Dean of Students' office and the Food Service Manager via e-mail and advised them that a "special diet" was coming down for the weekend. We briefly explained PKU, that it was a bit more than a vegetarian diet-that it required special flour, pasta, and bread-and asked how they wanted to handle it.
The Food Service Manager was extremely helpful and forwarded the weekend's menus to me via e-mail. I adapted them to the PKU diet and sent the special ingredients with detailed instructions on how to prepare each meal being served that weekend. For example, I sent pre-made pizza dough, low protein shredded cheese, and instructions to the kitchen on how to bake the dough. I also asked them to use their pizza sauce and vegetables for toppings. One kitchen person was in charge of Mark's meals. The weekend went well, and the Food Service Manager and head chef both indicated their willingness to work with us to feed Mark when he came back "for real" in the fall. They even promised to order the products Mark used. We knew we'd have to iron out the details once we figured out the system and saw what everything cost. The school guaranteed Mark his first choice of dorms, with a kitchen closest to the dining hall.
Throughout the summer I downloaded Harvey Mudd menus off their web pages and created a cookbook of recipes, cooking instructions, PKU cooking tips, food sources, insurance information/protocols, and other pertinent PKU peculiarities. I sent detailed e-mails to the food service manager outlining what I was doing, asking if this was what they wanted and needed. I indicated my willingness even to come early to train the chef if needed. I forwarded Mark's nutri-tionist's e-mail, telephone, and fax numbers to the college so they could check with his clinic if they had technical questions. We signed up and paid for the most complete meal package available, as we knew Mark would be eating most of his meals in the Harvey Mudd dining hall.
We forged ahead with our plans to go to Claremont a week early so our "secret weapon" could try out for the soccer team. I took two week's worth of prepared food, and we rented a suite-type hotel so we could cook and eat. And to get the kitchen going once school started, I also took lots of pasta, frozen Cambrooke Foods breads, low protein cheeses, low protein cold cereal, rice, my cookbook/instruction book, a bread machine, and formula. We were excited to pass this cooking off to trained professionals!
The Best Laid Plans Go Awry
When we walked into the dining hall to announce our arrival, everyone greeted us with blank stares. They had no idea who we were or what PKU was! The whole team we had worked with in the spring-food service manager, chef, and his helper- was gone! My lengthy e-mails were floating in space! We had to start all over again educating everyone. To say we were frustrated is a gross understatement. But the new team proved as willing as the old team to work so Mark could eat and keep his brain cells firing. I reinforced the fact that Harvey Mudd was a hard school, and if our angel had any wattage shaved off his light bulb he'd fail. Nobody wanted that, thank goodness!
Second Time 'Round is a Charm
While Mark was trying out for the soccer team we were in the dining hall and on the phone setting up our new food system. I created a whole new cookbook using the new chef's four-week rotation of menus, adapting them to PKU products and Mark's daily phe tolerance. We worked out a product ordering/insurance billing system, and we kept it simple by only using two food vendors: our clinic here in Portland and Cambrooke Foods. We also worked with our insurance company so that Cambrooke Foods could bill the insurance company directly. We already had that system with our clinic's "store." Now, when the college needs more PKU products, the chef orders what he needs from either our clinic or Cambrooke Foods. Those vendors send the college the food, bill our insurance, and the college pays the difference. Since we bought the most liberal (and expensive) meal plan from Harvey Mudd, and since Mark only eats about 10% of the college foods, the finances come out okay. We agreed with the college that they'd keep track of Mark's bills, and if they were a lot more expensive than the plan we bought, we'd pay more. Of course no mention was made of what would happen if the situation were reversed and Mark's bills were a lot less than the plan we bought. Oh, well. They should be compensated for the extra time, energy, and care Mark's diet requires.
Mark stores his formula ingredients in his room and prepares it himself. He tells the chef when he needs more and the chef orders it. We bought him a mini refrigerator and a water purifier so the water he adds to the powder is fresh and cold.
The kitchen requested that Mark come to meals about the same time every day so they can have his food fresh for him. He must tell them in advance if his plans are different. He doesn't have to go through the line for his food. He just pops his head into the kitchen and they give him his special meal.
We're one term into the program, and Mark's blood levels have been perfect, a consistent 6 mg/dl (360 µmol/L). The chef is extremely conscientious. Mark loves the food, is healthy, happy, and doing well in school so everyone is pleased.
Wisdom from Experience
If your favorite PKU'er is dreaming of going away to college, please don't let the diet daunt him/her or you. There are lots of logistics to work out, and you must press the bureaucracies to be flexible, but with politeness and persistence, you can succeed!
Start communicating with your insurance company, the college and your favorite food vendors as soon as your PKU'er has accepted the college's offer of admittance. You might even contact colleges earlier to see if one college seems more accommodating than another. Realize you're dealing with systems and their frustrating 'policies', and accept (and expect) the unavoidable snafus. One thing we learned is to check and double check everything. For example, if the college says it has contacted a vendor, call the vendor personally to see that it has been done. If the vendor tells you an order has been shipped, check with the college to see if it has arrived. Get close with your insurance company so they'll cooperate. Take nothing for granted. If something can go wrong, it will. Plan on that, and you'll be pleasantly surprised if things go smoothly!
Finally, keep your sense of humor, keep pursuing your goal of getting your system in place, and think of the fun things you can do with the time that you'll have now that you're no longer cooking for the PKU diet!