Tips for Diet Management from PKU Families

Here are a variety of ideas from parents for teaching your children about PKU and the diet.

• When my son was about two years old, I started cutting pictures of food from magazines and seed catalogs. I glued a picture of a particular food on one side of a 4" x 6" index card. On the other side, I wrote the name of the food and the amount that would equal one exchange. I also drew a picture of a stoplight. I colored in the light that corresponded with the food (in other words, if the food was a "no" food, I'd color in the red bulb; if it was a food my son could eat but that needed to be measured, the stoplight's yellow bulb was colored "on," and of course free foods were given a green light). My son loves these cards and they serve many purposes. Originally, he would go through them and name the pictures. As he got older, he began to help paste the pictures to the card and color in the correct light. He has not reached the age (4) where he can look through magazines himself for food pictures, and help cut them out. And of course as he learns to read and write he could eventually look up the food values and fill out the information on the back of the card.

• Not only are these cards fun and educational, but they're helpful around the kitchen as well. I keep them in a file box in alphabetical order. For now, it's easy to find the food I need. As we do more cards, we could put them into food groups. I can also have him pick the cards I ask for. It's amazing the food pictures you can find. A sampling or ours: broccoli, garlic, mushrooms, peas, corn, turkey, roast beef, fried chicken, jelly beans, cheerios, Teddy Grahams, eggplants, peppers, marshmallow, Del Monte gelatin cups, etc.

• For counting exchanges, use red poker chips for 1 exchange and blue for 1/2 exchange. Have 2 cups labeled: one "start" and one "finish." Put them in the "start" cup. Let the child count out exchanges as they eat. This makes it fun counting out the exchanges.

• There is a phrase my parents always said to me as I was growing up: It's the tone that makes the music! I think that applies to educating our kids about the diet. Rather than using the terms "yes" and "no" foods, I like to use the terms Redlight (not allowed), Greenlight (free) and Yellowlight (limited) foods. My daughter, age 4, understands the concept behind the words. My daughter comes up to me and tells me that what I might be eating is a redlight, yellowlight or greenlight food. She never asks for a taste of the redlight foods. only the green and yellow. And if I say that she has had a high phe day and that the yellow is not allowed, she says O.K. I'm very relaxed about the whole thing. I don not "freak" if she does get some redlight foods, because then she will see that by doing that, she gets a reaction from me. That then gives her power to manipulate me. Kids are manipulators. That is how they learn what they can and cannot do in a relationship. If she does eat some redlight foods, I explain that she is only hurting herself. It's her choice. It's amazing that a 4-year-old can understand this, but they do. In the long run, it will be her responsibility to maintain her diet. All I can do is impress on her the importance of it. We just give them the tools to make the decisions to the best of their knowledge!

• Start early teaching them about their formula by using their name: "Katie's milk" or "Kenneth's milk," or "my milk."

• Don't eat off of each other's plates. Each person should have their own plate, to reinforce the concept of "mine."

• When a child complains that he or she hates the diet, ask why and what he or she would like to eat. Then talk about it and find a suitable similar food or one that the child especially likes.

• For young children (ages 5-8) try making a PHE-O-METER: Get a long heavy cardboard strip, then punch a hole top and bottom. Loop nylon cord looped through the holes and tied on the back. Mark horizontal lines for quantities of phe. Using a felt marker, color 1/2 of the cord. Pull up along increments to see "phe" as it is used. This is easy, cheap and very visual.

• I use an exchange calendar to keep track of my son's exchanges each day (he is five years old). There are pictures of soccer players on the calendar and each exchange is a piece of paper resembling a soccer ball. There is Velcro on the balls and on the calendar.

• Instead of referring to  yes" and "no" foods, our buzzword is "healthy foods." We feel this teaches our 2 1/2-year-old son the direct link between the foods we eat and the health of our body and mind. (True for ALL of us, PKU or non-PKU.} For example, if he asks us for a bite of our (high protein) bagel, we tell him it is not a healthy food for him because it is made with flour instead of his low protein baking mix. We then offer him a low protein bagel or another substitute.

• We discuss with our 2 1/2 year old son how different foods are healthy for different people. We point out that his 3-month-old (non-PKU) sister drinks milk from mommy's breast, mom and dad drink cow's milk, and Jared (our son) drinks a powdered "milk." We elaborate by also pointing out that some babies don't drink breast milk, but drink a powdered formula, and that there are many different kinds of formulas. We hope this increases his awareness that everybody is different, not just him, and that we all strive to be healthy. (Editor's note: You and PKU, by Margaret Taylor and Virginia Schuett, stresses this theme of "everyone has different needs." It is a storybook designed for children of around 2 1/2 years to around 6 or 8 years.)

• When my daughter was young, we had a very cute card printed up in large quantity. On the outside of the card, it had a cute picture of a child sitting at a table (you could use any child-centered graphic) and on the card it said: "Hi, I'm (her name) and I would like to tell you about PKU." The card opened up to describe PKU. We gave it to anyone who wanted or needed to know about our daughter's PKU and it saved me from having to repeat myself so much. People read the card, then asked any questions they had. It was also nice to have the information there to look at anytime. The card was 3 1/2 inches by 4 inches, on heavy paper stock, and folded in half to form a business-size card. The card inside said: "PKU is a rare, inherited metabolic disorder. When a very strict diet is begun early and well-maintained, affected children can expect normal development and a normal lifespan. When treatment is not started within the first few weeks of life, it can result in mental retardation and other neurological problems. Persons with PKU are unable to properly metabolize phenylalanine, an amino acid used to make protein. Phenylalanine is found in all foods that contain protein. The diet for PKU eliminates all significant sources of natural protein, including meat, milk, eggs, cheese, legumes, Nutrasweet and most products containing regular flour such as bread, cereals and pasta. Individuals on the diet drink a special synthetic formula that provides up to 80% or more of needed nutrients. They also eat measured amounts of fruits, vegetables, special low protein products and foods made of pure fat and sugar. Newborn screening for PKU is now carried out in every state in the U.S. and in many other countries. PKU affects one out of every 12,000-15,000 babies in the U.S.; 200-300 babies with PKU are born in the U.S. every year."

• We have a "no grabbing" rule at our house. We stress that our 2 1/2 -year-old ask mommy or daddy before grabbing food off our plate, the counter top, etc. We stated this rule to avoid diet accidents and also to teach manners. It is also something we emphasize while he's playing with other kids (for example, "No grabbing toys or treats from other kids, take turns and share.")

• To avoid giving a full-blown explanation of PKU to strangers or acquaintances who offer my 2 1/2-year-old son a high protein food (for example, someone at the grocery store offering a cookie or a sample of yogurt), we simply state the specific ingredients that aren't allowed in his diet. "Thank you, but he can't have eggs." No thank you, he can't have dairy products." etc. This approach avoids unnecessary (and complicated) explanations and helps educate my son about specific ingredients he'll need to be aware of (and avoid) as he begins to take on the responsibilities of managing his own diet.

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