Picture of hands kneading bread

 Today, we are at the beginning of a new calendar year in 2021. The Christmas decorations have been put away in our home, but the sweet memory of a small family gathering with our daughter and our son, and their families still linger. Both of them have PKU. Sarah has been on an unrestricted diet with the help of Palynziq for 1-1/2 years now. Our 39 year old son just started taking Kuvan. Our Christmas dinner was much different this year than it was in the early years of life with PKU. Our children prepared the Christmas meal this year, and it included meats and cheeses for Sarah, and vegan cheeses, lots of veggies, and low protein baked goods for our son.  

 Forty years ago, in the 80s after the initial shock, grief and fear of PKU wore off a bit, it became normal and routine to prepare whatever I could to feed them to make it appear as close to what my husband and I were eating. The protein limits for both kids was 3 grams of protein for the first few years of life. As they grew, they both reached their maximum intake of 350mg of phe, or 7 grams of protein. Life revolved around cooking. The PKU diet requires a lot of creativity! It was called a junk food diet because candy and sweets were the only foods to give your child after they reached their protein limit. Sugar was encouraged to satisfy hunger, but probably also contributed to more hunger.

 Back in the 80s the grocery stores were carried very basic items, and little variety in produce. It was difficult to find anything appropriate for the PKU diet in the stores.  Coffee Rich was the milk substitute for baking. Wheat Starch was the only available baking ingredient for breads and cookies. I made bread from scratch for my children with love and plenty of tears.  Sometimes the loaf baked successfully, but often it did not. The bread was often dry and only held together if I toasted it and slathered it with margarine. The cookies I made often spread thin instead of holding together.

 Parents shared tips and recipes through a printed quarterly newsletter that we all waited eagerly for in the mail. Over time, I started getting comfortable with the diet and began experimenting. Every recipe evolved from something I liked and wanted my children to enjoy too. Pizza was a difficult one to imitate. Everyone loves pizza, but what about the cheese? I found Campbell’s Cheddar Cheese Soup and used it as cheese. I used it for grilled cheese sandwiches and macaroni and cheese. The manufacturer may have changed the ingredients, because the protein on the label used to be lower than it is now.

 I added cereals in my recipes as a flour substitute, which helped hold it together as well adding some nutritional value instead of cake flour. Sarah got into creating recipes too. Her first low protein recipe was a salad made with cereal, and tasted much better than it sounds.

 Once Aspartame was approved as a food ingredient, we had to read labels more thoroughly because foods were not always labeled appropriately. Then Wel Plan baking mix arrived on the scene in the late 80s, and cooking for PKU seemed easier! My tradition was to make bread for the week every Sunday night. Sarah told me when she was younger that she loved Sunday nights because she would fall asleep to the smell the baking of bread. Those small words encouraged me to keep going and experiment on more dishes.

Though cooking and baking had their limitations and seemed challenging, it was all relative. We worked with what we had at the time, and it was all we knew. It is hard to look back and remember all that work, because now I can go to the grocery store and pick up a vegan cheese or gluten free bread if I did not have time to cook low protein food before my son visits. In ten more years there will be probably be more resources available. Others may look back and wonder how PKU families worked with the options we have today. PKU community was important then and it still is. Though we did not have all the resources available as we do today, we still took the time to prepare foods and cook because we knew it was necessary for a positive health outcome for our kids. PKU parents are brave and resourceful individuals! 

–Contributed by Cathy Lorimer, PKU parent