Writing about living with PKU during the 1980s was not the easiest topic to tackle. I was young and do not remember all the detail. It was the time in my life when my parents managed most of the diet. Even though they taught me lessons in diet management at a young age, my mom did all the cooking and measuring. I had a graph chart that I used to track all of my phe. I was responsible for making my own formula. I went to a small private grade school. This meant all of my twelve classmates knew I had a special diet. This did not make it easier, but at least I did not have to explain myself repeatedly to new people.
The 1990s were more memorable for me. I started preparing foods myself in junior high school, and created my very first recipe. It was a salad that involved cereal, vegetables, and mayonnaise and mustard. It tasted much, much better than it sounds. Diet with PKU involves a lot of creativity!
In this decade, I experienced the end of junior high, all of high school, and the beginning of college. Each of these moments in life are huge transition points for anyone. They especially significant for a person dealing with a strict medical diet. I did well in school in junior high due to strict diet management. As a result, when I entered high school I was immediately placed in all honors level courses.
Transitioning to high school was a big challenge. When I talk to parents of kids with PKU now, their biggest concern is about teenage years and high school. Remember kids were told they could go off diet around the age of eight during the 1980s? Those narratives make a difference. When I transferred from a small junior high class to a high school class of five hundred, it was a big deal. The first year, I spent most of my time with a friend from junior high who attended a different high school. Once I started making friends at my own school, I also started eating foods off diet.
It was not intentional at first. I thought I could handle teenage activities at the same pace everyone else could. I didn’t realize in order to perform well I had to meal plan and maintain my diet. At first it started with pasta at Olive Garden on Friday nights before my Saturday track meets. As my social life got busier, I ate fewer low protein foods. I did not tell my new friends about PKU, because food related disorders were very unusual. I did not know how to explain PKU to them. I drank formula when I was home, but some days I would be so busy I would only get a fraction of the amount I was supposed to be taking in. Now that I look back on those days, I realize that my non-PKU diet was not objectively healthy in any way. My mom was still preparing low protein foods for me and my brother, who also had PKU but I was often out of the house at track practice or at my part time job. When I was not home, I ate whatever my friends chose. I ate pizza, burgers, pasta, orange chicken, and anything else that looked good. Almost all of it was fast food.
I did not perform well off diet. Just like people with PKU have different tolerances, everyone has individual responses to high phe levels. Doctors are learning more about the blood-brain barrier and think some of these differences are also due to brain composition. I began failing my honors classes. I could not concentrate, and I experienced significant depression and emotional instability. At sixteen years old, I did not quite realize that my hours-long crying sessions were a result of high phe levels added to normal teenage angst. Once I realized my challenges were likely correlated to my diet, I worked hard to get back on track. When I did, it felt almost miraculous. I began getting A’s in my classes again, without feeling like I was putting additional effort into studying.
This helped me understand why “diet for life” was so important. Technically, I cannot say I have been fully on diet for life because I was completely off diet for two years of high school. But I worked hard to stay on diet for the remainder of my teens and twenties, and this is unusual for my generation.
I had more adjustments as I left home and moved across the country for school and later for a missions program in my late teen years. I will write about that separately. For those who are raising kids with PKU who have not had to deal with teenage years yet, external circumstances are not the same as then. I can’t promise that diet management will be easy during critical transition years, but some factors can make it easier now than it was then.
Why PKU is Easier Now Than it Was in the 1990s
- Food sensitivities are not as unusual as they once were. When I was a teenager, veganism and vegetarianism were not mainstream. Although access to vegan and low protein acceptable accommodations varies around the country, it is easier to find medically appropriate food now than it was twenty-five years ago. Restaurants are more likely to modify a menu item for a dietary need than they once were. Many grocery stores now carry low protein non-dairy milks, vegan cheeses, and gluten free breads. While these foods may not fully replace medical foods, it is useful to be able to go to a local store to find an appropriate choice rather than wait for an expensive shipment of medical food. Most people in common culture also now understand restrictive diets. It is now easy to find others on a restrictive diet, whether out of choice, for health reasons, or for medical necessity. Society accommodates food related differences better than decades ago.
- Doctors know how to treat PKU better. Currently, Kuvan is available in many parts of the world for PKU patients of all ages. This was not available when I was a teenager. It has helped many people maintain better levels, and these reduced phe levels help people to be more successful than they may be otherwise. We also have hope of lots of future treatment options. However, the reality is parents of children with PKU understand the importance of diet in a different way than we did thirty or forty years ago and this is significant. It helps prepare kids for a different expectation of teenage years. For much of the 1990s, doctors still believed levels above 6, but below 10, (360-600 mls) were acceptable once the brain had developed. This perspective was more relaxed than current standards. I do not recall exactly when this changed, but I remember thinking differently about my levels around 2003-2004. Now that doctors understand what leads to the best outcomes, people with PKU have more opportunity for success.
- It is easier to connect with PKU peers through social media. Community makes a big difference. I still meet people who have never met another individual with PKU in person. Because I grew up with a brother and cousin with PKU, I was never fully alone with the condition. A support system makes a big difference. I also felt more successful once I began connecting with the PKU community on social media. If you do not have a local PKU community to connect with, you or your child still have the opportunity to get support via the internet. It can make a big difference.
We have come far as a community. The future holds a lot of reason to be optimistic!
Stay tuned for the 1990s…the college years!