Learning to Live with PKU

By Kathy Streng, Fenton, Michigan


Eighteen months ago my husband and I were blessed with our second child, Tanner Michael Streng. Tanner was welcomed by his older sister Kylie, who is 3 years old, with overwhelming excitement. After Tanner's first week of life we received a phone call from his pediatrician that he had tested positive for PKU. Because Kylie does not have PKU we were shocked and devastated to find out that we were carriers of this rare genetic disorder. After many emotional months of educating ourselves, we realized we needed to take control of this situation and determine what was going to be the best way to adjust to this new way of life, not only for Tanner, but the entire family. We knew right away that we didn't want to make Tanner feel 'different' because of his PKU and we didn't want to make Kylie feel 'different' because she didn't have PKU. Each of our children were special in their own unique way and the real challenge for us would be to recognize and encourage their individual needs without making the other feel less important.

With both my husband and I working outside of the home, good organizational skills are a must. We quickly decided that it would be easier for me to be in charge of preparing all of Tanner's food and tracking his PHE intake for each day until Tanner is old enough to become more involved. Because he is a Classic PKU, we know the importance of strict and proper diet compliance each and every day. I hope having Tanner involved in the daily activities required to maintain his diet will encourage a life-time of proper compliance. I always encourage Kylie to help while I'm making dinner. It may be as simple as putting the butter on the vegetables or arranging the toppings on our homemade pizza. Whatever the task may be it has helped to improve her eating habits tremendously and has helped her to take pride in herself for eating a healthier diet.

The first thing I did is make a very large purchase from the Tupperware company. I already have many Tupperware containers with light pink lids that I use for storing many of the foods Kylie eats. For these new items I purchased dark green lids. This way I could store all of Tanner's food in the green lids. Kylie and Tanner now each have their own special containers with their own special food. This has proven to be very helpful for anyone caring for my children. It's made very clear that each child can only eat the snacks from the containers with their colored lids. I've carried the same concept into the containers I use for Tanner's day care providers as well. All of his food is in either a dark green dish or a dish with a dark green lid. Even his juice and milk cups have dark green lids. His day-care providers have expressed on more than one occasion how very helpful this has been for them. They use the same criteria there as well. They even found some dark green napkins that they give Tanner his snacks on because some of his PKU treats look like the treats the other kids are eating.

Having so many containers does take up a significant amount of space and it can get tiresome looking through the containers to figure out what is inside each of them. After about a week, I decided to make several different labels each describing the contents of each container. Now I just read the labels and grab the specific one I need. For the PKU Master Pancake recipe I typed the directions on how to make one pancake on an additional label and attached that to the container with the dry pancake mixture. The labels have worked out wonderfully. Another advantage to having ingredients and snacks stored in separate Tupperware containers is when we take vacations. Rather than having to take everything from boxes and put into containers just for the trip, I just pack the containers I use every day. Once we reach our destination, I find a convenient place to store them and I feel right at home. The air tight containers also help to keep the contents fresh.

Preparing Tanner's food can be very time consuming. Because of our busy schedules, it just wouldn't be possible to cook his main meals every day. As soon as he started eating more solid foods I quickly selected one day of the week to do my bulk cooking. I freeze enough portions to get me through the week. I made another large purchase of containers for storage, but Rubbermaid was the winner this time. And yes, they have small individual serving containers with dark green lids. I chose Sunday as my day to cook. The day is spent making goulash, several different casseroles found in the PKU cook book, mushroom burgers, baked potatoes, sweet potatoes, squash, desserts, crackers and measuring formula for the week. I use the items that I freeze as his main dish and then add a fresh fruit and vegetable to each meal. Many of the desserts freeze great as well. I've also found that measuring out his formula for each day of the upcoming week has saved time and has been helpful when last minute over-night events come up. I have a Tupperware container with seven zip-loc baggies inside. I measure the amount of formula he's required each day into the individual baggies and each morning I pull a new baggie out using the formula I've already pre-measured. I empty the baggie contents into a container and add water. There have been times when we have decided to go away for the weekend and it has been very helpful to just pull out the number of baggies I need, open the freezer and pull out the main dishes for a couple days and pack a few snacks. To help identify the items in the freezer I made labels with three separate lines identifying the type of food, the weight and amount of PHE and the date the food item was prepared. Some of the foods will last more than a week. When I add the next weeks food to the freezer, I like to make sure I use the oldest food first before starting the newer food.

Making the desserts is a lot of fun for both Tanner and Kylie. I always make sure that when I make Tanner his cookies we also make Kylie some of her cookies. Many of the PKU desserts are very tasty so when we don't have time to make both I make a PKU snack .…. Kylie doesn't mind a bit. Many times she will ask for one of Tanner's PKU cookies or some other PKU snack. They both especially like to be involved in the dough making process. They each help adding the ingredients and when the final product comes out of the oven they are so proud at what they've made. Of course, they love sampling their work the best! I've found that when it's Tanner's turn to bring treats to the Montessori School he and Kylie attend, his PKU treats have been a big hit. Even though the ingredients are costly, I feel it's important that he is able to share what he has brought for the other kids. And the teachers and students have been pleasantly surprised at how good they taste!!

To make the transition into Montessori School easier for Tanner, the teachers and the students I decided to prepare a mini-lesson plan educating everyone about PKU and the importance of strict diet compliance. From my earlier days of teaching I had prepared a lesson plan teaching the four main food groups and the importance of a healthy diet. I basically modified the lesson plan to fit Tanner's diet and called it 'Tanner's Main Food Groups'. The lesson plan not only educates the students about the food Tanner eats but it also stresses the importance of strict diet compliance. I'm hoping to discourage children from offering foods to Tanner that he can't have. I feel they need to understand that this is not like an allergy that has an immediate reaction, rather the damage is a slow process over a period of time. I've incorporated Kylie into my lesson plan as a key player in our home in helping to monitor Tanner's diet. I thought this would help her to know that she plays a very important part in dealing with Tanner's PKU. I encourage her to never offer Tanner any food without asking my permission first and to always make sure Tanner does not drink from her cup or eat from her plate. She has become so comfortable with this that whenever she sees Tanner put food in his mouth she will ask "is that PKU food mom?" After I respond yes, she replies, "Oh, that's good, because you know he can only have PKU food." I always smile and tell her what a great sister she is to be looking our for her little brother like that. Tanner senses this and loves his big sister dearly. In our home, or any home with children on a special diet, this type of involvement helps to give the child not on diet a sense of involvement and responsibility. Kylie is wonderful about telling other kids that offer treats to Tanner that they have to ask her mom first or that he can't have it because he has PKU. Tanner is not always happy about this, but I'm confident as he gets older he will learn the same good judgment. Especially with his big sister setting such a wonderful example!

We recently attended our first birthday party that both of the kids were invited to. I wasn't real concerned about the food, I would just bring his meal like I always do, but the cake and ice cream were another issue. I knew when they served the cake he would be looking for his piece and it would break my heart to see them pass him by. I decided to call ahead to the place the party was at and find out what type of cake was going to be served, the color of the cake and the color of frosting. Luckily, it was white cake and white frosting and the birthday girl was going to decorate the cake herself with candy sprinkles. I made a PKU cupcake with white frosting and added some colored candied sprinkles. When it came time to serve the cake I asked the server to please give Tanner his piece. It worked out great and nobody even knew the difference.

Having PKU as a part of our every day lives has affected each of us differently. Most importantly it has helped us all to appreciate our good health and to realize that no matter how overwhelming things may appear initially, with faith, determination, education, and a lot of love, there is no challenge that can't be met. And there is, without a doubt, no amount of hard work too burdening to sacrifice the good health of your child. Tanner's PKU has brought tremendous strength and unity to our family. Many of our family and friends still feel such sadness for what we live with each day and what Tanner will live with his entire life. Whenever they express these feelings I encourage them to feel gratitude rather than sadness. We are very grateful that Tanner's disease is something that can be controlled and treated. I thank God every day for allowing me to take such an active part in caring for my child and most importantly that the care I'm able to provide is the key to his good health.

I hope sharing a few of the things I have done to make living with PKU easier for me and my family will also be helpful for you. I have found such great support from other families living with PKU. The ideas they've shared, the suggestions for preparing food and the incredible emotional support has helped me through these past eighteen months more than they realize. I've made some wonderful life-long friends who truly understand the roller coaster of emotions experienced by me and my family these many months. But the greatest gift I've received through all of this is a beautiful, healthy, happy, affectionate, loving son. If I can give to Tanner even half of what he has given to me or teach him even a portion of what he has taught me in the short time he has brightened my life, than I know I will have surely found the perfect way of telling him 'thank you' through the unspoken words only understood by a mother and her child.


Last update: 10/99
National PKU News: www.pkunews.org
E-mail: schuett@pkunews.org