A few weeks ago I began writing about growing up with PKU in the 1990s. Quite a bit can change in ten years when you live with PKU. The 1990s also took me all the way from grade school to leaving home for the first time. The teenage years are a big time of transition for anyone! Growing into adulthood with PKU has some unique challenges. Keep in mind when reading this, there are many, many reasons to be optimistic about the future. My struggles and challenges will not be true for everyone. Social support is much more accessible now than it was twenty years ago, and that alone changes the conditions for success for PKU kids and teenagers today.
When I finished high school in 1997, I prepared to go to college and live on campus. I chose a school in Minnesota, about six hours away from home. When I left for college, I was determined to stay on the PKU diet. I went off diet for two years in high school and had gone through difficult a time with learning and emotional stability as a result of high phe levels. Therefore, I knew by the time I was eighteen how important diet was. But I was not quite sure how to tell my new friends about PKU, so I gave vague explanations.
I did not have any special arrangements for campus life. I was not really aware of the rights that the Americans with Disabilities Act would have allowed me for special accommodations. Since I was not yet comfortable sharing PKU as part of who I was, I am not sure if I would have done anything different even if I had known I could have had foods prepared for me. I ate my meals in the school cafeteria and kept snacks in my dorm room. I made my formula and rinsed the containers in the floor kitchen or bathrooms, but I often tried to do it at times when no one was around. I learned that it was pretty easy to make single serving formula by putting it in a Tupperware and mixing with water and shaking vigorously. I was drinking orange flavored XP Maxamum by then. Even though I did not mind the taste, I knew it smelled funny and worked to avoid drinking it in front of other people.
My meals were usually salad and fruit from the cafeteria, and sometimes I would add a little rice or a small piece of regular bread, although I always watched my portions very carefully.
Mostly I tried to be very subtle about my food choices and minimize what other people saw of my medical condition. If I got hungry, I would exercise to keep from thinking about it. I lost some weight my first semester of college. Campus life went well for me. I loved my classes and had fun with friends.
Even though I did not have any special accommodations, there were enough fruits, vegetables, and French fries in the cafeteria on a regular basis to keep me satisfied. I kept snacks in my dorm, but tried to only have free foods so I would not been tempted to overeat protein between meals. Betty Crocker cake frosting straight from the can was a favorite snack! My PKU diet was my key to excelling, and because I worked hard to eat right, I was on the dean’s list with high honors for this year of college.
The next year I decided to take a year off of school to participate in a one year missions program. It was located in the United States, but I moved into a household with five other young adults who became my teammates. We were given a very strict food budget. I still did not ask for accommodations, and this was the year I probably needed them. Looking back at that time, I should have had my own food budget and been able to do my own food shopping.
Because it was a missions program, my team was supposed to eat dinner together several times a week. We would take turns preparing the meals. We would also take turns doing the grocery shopping. When it was someone else’s week to shop for the household, I often only had canned fruits and vegetables as my low protein options for the week. Because the budget was tight, I ate lots of canned fruit cocktail and green beans on those weeks.
The others I lived with tried to help with my diet, but I did not really know how to explain it very well. When my teammates would cook, they would take the dairy or meat out of a recipe for my portion. My diet was closer to a vegetarian lifestyle than it was low protein. I did not eat animal products and I continued to drink my formula, but I ate plenty of regular breads, potatoes, and other higher protein vegetables. I did not take many levels that year, but I know they were probably high. Even though I was not off diet, I had more personal challenges during that time than I had the prior year due to higher levels. On the college campus, I had more control over my food choices, even if my options were limited.
Leaving home for the first time is hard for anyone, because there are lots of adjustments and responsibility that comes with new independence. PKU adds a dimension of complication to those challenges. Hopefully with new treatment options, many young adults will be able to safely be on less restrictive or completely unrestricted diets when they leave home for the first time.
If that is not the case, here are some ways to think about preparing yourself or your teenagers for independence.
Learn/teach how to talk about PKU comfortably in a variety of settings and with layers of explanation. I know there are many people who prefer not to talk about PKU publicly. We all have to make individual choices about how much to disclose and when. Unfortunately, PKU (treated by diet) is a medical condition that requires some level of disclosure whenever we eat. Sometimes, someone may simply ask if we are vegan because of the choices we make. Other times, we may have to explain in detail the specific ingredients that are ok or are not. What needs to be shared is situational. Later in life, I learned that in a setting when I am only sharing a single meal with someone, I might be able to get away with saying I am vegan or on a restricted diet and leave it at that. In another example, such as with roommates, it is probably necessary to go into a detailed explanation because you will be regularly eating meals together. Not everyone has to know everything, but the more you can share with the people who do need to support you, the better you will be able to access what you need.
Ask for and expect dietary accommodations. I realize there are people all over the world reading this, and I am not familiar with legal protections for medical conditions in countries other than the US. This is specific to readers in the United States, but please feel free to drop a comment sharing what it is like in your country. It helps us understand and support each other better as a global community.
In the United States, dietary accommodations are covered under the Americans with Disabilities Act. This is not to be confused with the Medical Nutrition Equity Act, which has not yet passed and is designed to make medical foods more affordable. I will write a separate post about this topic, because many people are not comfortable identifying PKU as a disability. That is totally fair, but basic food accommodations for the PKU diet are reasonable and should be provided to you whenever accompanied with a letter of medical necessity written by your medical team. This might be something simple like a salad or fruit and veggie plate. In many public settings, you can communicate with restaurant managers, event coordinators or cafeteria managers to ensure PKU friendly options.
Practice cooking skills for both high protein and low protein diets before you leave home. Cooking is a critical skill when it comes to managing PKU well. Pre-packaged medical foods are still really expensive, so the better you can cook PKU friendly foods with store bought ingredients, the easier diet management will be. If you can live somewhere with a kitchen when you move away for the first time, cooking can go a long way to staying healthy with PKU. Cooking is a life skill, and one that can be fun. Don’t avoid learning to cook high protein foods either. There is a high probability that at some point in your life, you will want to prepare a meal for someone who does not have PKU. Your future treatment may even allow you to eat high protein foods in the future, which is something I did not anticipate in the 1990s! Cooking with regular breads, flours, eggs, etc, also can help you become more skilled at adapting high protein recipes to make them low protein safe. Make food fun, and PKU becomes easier to manage!
Stay tuned for the 2000s…I was introduced to low protein foods prepared by other cultures!