Tips for Diet Management from PKU Families

Educating teachers and classmates

• At the start of each school year, I go in and talk with the teacher and explain PKU, along with an easy-to--read explanation of PKU and diet that I put together. If possible, I also sign up to be a room mother, which gives me better control or suggestions on party snacks and treats. As a room mother, I have sent home a note to parents (with teacher’s permission) telling them briefly about PKU and if it was their child’s birthday to call me a few days ahead so that I could send a similar snack for my daughter. This also keeps the teacher free of one more thing to have to remember. I have always found parents to be responsive and understanding. I have had parents change their snacks to something my daughter could have (for example, Rice Krispie Treats) or even offer to bake it for me if they could buy her baking mix. Some have decided not to send food, but instead send a small prize (comb, stickers, etc.)

• We sent a letter to our son's kindergarten teacher, which included a condensed food list, 1 page of snack foods for quick reference, and a breakdown of his typical exchange allowance for meals and snacks each day (using a two day sample menu). We explained that we needed the teacher's help in keeping a good diet record, and that if our son was offered something at school for a snack or during a cooking class it was important that we know exactly what it was on a note so that we can calculate and adjust what we offered him at supper. We explained that most of his nutrition comes from his "super milk" (Phenyl-Free) and that we offer juice or other beverages mainly after he has finished all of his "milk." We explained that he should never be given anything containing Nutrasweet or Aspartame. Finally, we explained that foods high in protein such as milk, meats, eggs, cheese, dairy products, nuts, pasta, rice and dried beans were not allowed on our son's diet. Instead, it consisted of his milk substitute and measured amounts of fruits, vegetables, low protein baked goods and low protein cereals. We closed the letter by telling the teacher to call us if she ever had any questions about the diet, and thanking her for helping us successfully manage the diet.

• Probably one of the hardest things I’ve had to do is trust someone else with my son’s diet. When the first day of Kindergarten rolled around and all the other moms were upset that their babies were going off to school, I was upset because I’d have to rely on the teacher to make sure my son stuck with his diet. That was three years ago. Every year before school starts, I find out who his teacher will be. Then I set up a time before the school year starts to talk with her. I take along a copy of The Teacher’s Guide to PKU and his daily diet records. I explain the importance of the diet and formula and show the teacher how we have to keep a record of what he eats. I also answer any questions he or she might have.

• We do not allow the school nurse to take charge of formula for our ten year-old son. It is his responsibility and he carries his own. If the district tries to insist on the policy that all medicines be kept in the nurse's office, refresh their memory that the FDA took care of this for us by removing PKU from the list of drugs--it is a medical food!

• Ask your child’s teacher to have a discussion about "differences in people." Use this as an opportunity to discuss with your child any negative feelings he or she may have about being "different" because of PKU. Let the child know that PKU is just a small part of the wonderful, unique person that he or she is.

• We have always been up-front, open and honest about our son’s diet. All of the kids in his class know about his diet and formula (that only he likes). The first day of every school year the teacher usually explains that he has a special diet. This year he enjoyed helping the teacher tell the kids in his class he has PKU and has to eat a special diet and drink a special formula. He came home from the first day of school very excited that he got to tell the kids about his diet. We believe that our positive attitude at home has led to his self-confidence in telling his peers about PKU.

• We have learned to tell the teachers only what the really NEED to know. If they "think" there is something wrong, they will look for there to be something wrong when there may not be. It’s only natural.

• Respect your young child’s privacy. Let him or her choose to tell others about the PKU if he or she wants to. By school age, they are well aware of their diet and will refuse the "no" foods on their own. Never underestimate your child. They know what to do because your positive parenting has led them to feel confident. Our child tells only the people that are privileged to be her good friends, and that’s HER choice.

• When looking for day care, give the care giver information about the diet and its significance. But remind them that it is not like a peanut allergy where 911 would need to be called!

• Federal law requires that school systems do not discriminate against the special dietary needs of a child. The school MUST supply a low protein lunch and you can insist on a hot lunch for your child if you want (inclusive of low protein pizza, veggie burgers, etc.) The school must purchase the ingredients and prepare the food BY LAW. This, of course, is a judgement call as to how much attention you want drawn to the diet.

• Some school lunch ideas from a number of parents:
  

  • Different kinds of soup in a thermos.
    
  • Low protein cheese sandwiches and cut up veggies with Ranch dressing.
    
  • Salads, muffins, fruit snacks, pasta salad.
    
  • "Lunchables" packaged lunches, replacing high phe items with low phe items such as breadsticks with sauce, crackers, low protein cheese, fruit roll ups, raisins, grapes, mini pickles and then hot glue the package closed.
    
  • Tacos using low protein shells, shredded lettuce, shredded low protein cheese, diced tomatoes, shredded carrots, sliced olives, etc. with a packet of taco sauce on the side.
    

  • Rice a Roni (low protein version), macaroni and cheese (low protein version).
    

  • If your child has enough phe to work with, triangular Ore-Ida hash browns make nice lunch box "sandwiches" when split down the middle and filled with catsup.
    

  • For my son’s lunches, I make the Traditional Pizza Crust (p. 268, Low Protein Cookery for PKU), which makes four pizzas. On each pizza I use 9 tablespoons Tomato or Ragu sauce. After the pizzas are fully baked, I cut each into four pieces and freeze each fully cooked pizza in a Ziploc bag. In the morning, I place a frozen pizza into my son’s lunch box. It will be thawed and ready for him to eat at lunch (yes, he eats it without heating and loves it!).
    

  • The applesauce Muffins (p. 124, Low Protein Cookery for PKU) are extremely easy to make, freeze well and also make a great lunch box item.
    
    

• Use individual ketchup packets in lunch boxes if your child takes French fries.

• Freeze some formula in an open thermos overnight, perhaps one inch in the bottom. That will keep the rest of the formula cold for some time.

• Use a "Flip-Top" thermos for school lunches to avoid drawing attention to the smell of the formula.

• The new Hi-C cans are fun, even though they are only about 7 oz.

• I found that an 8 oz. Aladdin thermos, foam insulated, that has a spout. This is very helpful because the lid doesn’t need to be removed. A straw is able to fit in the spout.

• We have our daughter drink her milk before school, then brush her teeth and take a breath mint (she was told she had "bad breath" by a child on the bus).

• Small party bags with cartoon characters make bag lunches more fun.

• After trying many others, our lunch box pick is "Arctic Zone" with a click case insert. Click case perfectly fits new Rubbermaid non-leaking sipper container (square, not round). Perfect to keep formula cold and doesn’t leak, with plenty of room for other lunch items. This is A LIFESAVER!

• I obtain the daycare lunch menu at the beginning of each month. When planning my daughter’s snacks and lunches, I try to pack similar foods to those listed on the menu—whether that similarity is shape, texture, taste or color. Sometimes it may be the same vegetable or the same fruit.

• Last year my daughter started a new school where she could buy the school lunch. Another hassle? No. I went in a spoke with the school nurse and asked if she could buy only what she knew she could have (for example, French fries, rice, fruits, vegetables). The nurse arranged it so that all the cafeteria personnel got a chance to meet our daughter personally so they would know what she looked like and would not question her in front of the other kids. They know her now, and she is allowed to buy only what she can have and pay for only that (the other children have to buy the complete lunch). I get the lunch menu ahead for the month so we can plan together what days she can buy what.

• If your child is in preschool, ask the chef if it is possible to let you help plan your child’s lunch. At my son’s preschool, other children are eating at least one or two items each day that are appropriate for the diet. When he was only a year old, the chef and I sat down and worked out a 30-day "maximum variety menu" for my son each month. It rotates a variety of measured fruits and vegetables for lunch every day that satisfy his hunger. Already at age 2-3, peer pressure is strong and he eats extremely well when the rest of his classmates are eating their lunch and snacks. Examples of his lunch:

  Monday: cranberry sauce, pineapple chunks, asparagus
  Tuesday: fruit cocktail, squash, sliced beets
  Wednesday: mushrooms, applesauce, lettuce with Italian dressing
  Thursday" sliced carrots, peaches, green beans
  Friday: pears, turnip greens, cauliflower

• When my son was in day care, which served lunch, I asked for a menu and highlighted the items that he was able to eat. The children all served themselves so I gave my son a measuring cup (1/4 cup) and he was able to help himself to allowable foods like the other children were doing. The day care providers also were willing to write down on a list each day what he had for lunch.

• I am very fortunate to have a daycare that works with me to make sure my son is fed the correct foods. They give me a copy of the menu they are having each month. Then each day, I fill out a sheet that has the items he can have for each meal. Anything that is on the daycare menu that he can have, I indicate that it is to come from the Daycare. In case they substitute other foods on a given day, I have a list of foods he can have on that sheet as well and they will give him an alternative. Foods that I send with him are the low pro Spaghetti and Dilatini. He loves them with plain spaghetti sauce. I usually make enough for several servings and freeze it. He also loves the mushroom burgers that I make (Low Protein Cookery for PKU, p. 234). On "soup day," I make a veggie soup for him using tomatoes, corn, green beans, okra, cabbage, lo protein noodles and G. Washington's Broth. Recently I started making him veggie nuggets. I'll also make mashed potatoes, and green beans. Snack foods I give him are some of the low protein pretzels, Hunt's Lemon Pudding, Hunt's Juicy Gel's, and Rice Krispie Treats.

• My 2-year-old daughter goes to day care 5 days a week, full-time. I have found that packing her breakfast and lunch the night before in divided plates with lids that I ordered from Tupperware, and putting them in an insulated lunch box has been very fast and convenient. On her diet record I write what the meals are and how many exhanges or how much phe it equals. Then the day care provider only has to record the times that she fed my daughter. I have also compiled a list on my computer of a variety of foods that she can have and how much per equivalent or 15 mg. of phe she can have of that food. I have given a copy to the day care provider so in case my daughter won't eat what I have packed she can substitute in other foods.

• I would just like to share our experience with the public school lunch program in our location. Let me preface by saying that we moved from the Fairfax County, Virginia public schools to a small town in Arizona when my son was in the second grade, and I truly believe that the attitudes about understanding the diet and being flexible with it are specific to each locality.

  On our first visit to clinic, our nutritionist advised us of the law requiring the schools to provide low protein foods. A package was then sent to my son's specific elementary school with the appropriate literature regarding the law. I was then able to meet with the school cafeteria manager and office staff and teachers to work something out. One of the first things they offered was to purchase, as they are required to do, some low pro pasta to serve. I consider that they were being quite cooperative at this point, as in our district, they struggle for every penny the public schools get. We declined the offer of the purchase of the pastas in our situation simply because my son does not care for them and they would most definitely wind up in the garbage.

  However, since that time, I obtain a copy of the upcoming month's menu. Using a black marker, I mark everything off that he is not allowed to have. He is then able to get double servings of the fruits or vegetables for a particular day, guided by a list that I provided showing "yes" doubled serving foods, such as green beans, fruit cocktail, and "no" double serving foods, such as corn or peas. The lunches are then supplemented either from home with sandwiches and cookies, or supplemented by the school with a tossed salad. He also has available to him, on days his lunch would be quite limited, the "adult" salad made available to the school staff. When I met with the school, they also provided me a list of what all the serving sizes were for the various foods, as well as the actual little plastic serving cups used for salad dressings, etc.

  I meet with the school at the beginning of each school year. My son is now in fourth grade, going into fifth in the fall, and for the past three years the school has offered to purchase the low protein pastas. They are also quite open to having me bring low pro foods to be stored in their freezer, such as low pro pizza for pizza day once a week, etc.

  Also, since the second grade, I have stressed to my son that the reason it's so important that he let's me know what he did *not* eat for lunch is so that those exchanges will be available to him later in the day, that it is actually to his disadvantage not to tell me or bring home what he did not consume on days that he packs his lunch. It's been a hard road, but he's finally grasped the idea. And it is frustrating trying to figure out just how much did the crust of the bread on that sandwich weigh! I think we are very fortunate to live in a place where the school is very willing to work with us without any struggle whatsoever.

Parties

• Freeze cupcakes to be take to birthday parties. Also, keep Italian Ices/popsicles in the school freezer and take the teacher a can of Pringles or some snack to have on hand for unexpected "events."

• For birthday parties, I send two pieces of birthday cake that I have already had decorated and placed in the freezer (from a previous home birthday party). Each piece is wrapped very well in plastic wrap and then put into a freezer Ziploc and labeled. My daughter's teacher knows to just microwave the cake for about 10-15 seconds.

• When I send in cakes for the school I buy the whole class' cakes at the store and bake a special cupcake for my daughter which I then have decorated like the cake for the rest of the class'.

• Send chocolate pinwheels from Low Protein Cookery for PKU, p. 380 (which can be eaten even if partially frozen ) or a Little Debbie Fancy Cake (32 mg phe). I also take in a box of Italian ice and they kept that in the freezer for parties and special events.

• Let your child keep a package of cookies or individually wrapped treat in his or her desk to use when a party pops up unexpectedly.

• We send a box to school with "free" and low protein snacks, candies and juice boxes for the teacher to keep on hand in case something comes up on short notice.

• I send frozen low protein cupcakes to the daycare—a couple at a time—for special events that may not be planned, like birthdays.

• Send Cakemate decorating gel to school parties with your child when you have nothing special prepared. He or she can decorate a plain cookie for the occasion and even share with classmates (making the experience of being "different" more positive).

• When my son entered kindergarten, I gave his teacher a bag of tootsie roll pops so if there was a birthday treat he could have a pop instead of the cupcake.

• I send cupcakes (not iced) for the school to keep in their freezer so if an unannounced party comes up, my daughter always has a special cupcake for herself. The teacher keeps in the classroom the icing and sprinkles I send in a Tupperware container.

• Have cupcakes frozen and kept at school, but also make "goody surprise bags"containing stickers, free candies and special surprises. When a party occurs, have the teacher offer your child a choice: "Do you want a cupcake or a goody treat bag?" (9 out of 10 times it will be the surprise bag!)

• Some suggestions for treats to send for Birthday parties at school: Rice Krispie Treats (either homemade or store bought), fruit roll ups, fruit snacks, "finger Jell-O," low pro party mix (, Almond bark with Rice Krispies mixed in, fresh fruit, carrots, Oreos frosted to look like cakes, and small bags of chips.

• For a party, I decided to make Popcorn Balls. I used the recipe in Low Protein Cookery for PKU, then wrapped them in pink plastic wrap, and tied a ribbon around each one. They are beautiful!

• For babysitters, use small yellow post-it notes on allowable snacks with the amount allowed, or write directly on the box what is allowed.

• When dealing with caregivers, I always encourage them to call me at work with any diet questions they have. My child’s health is far more important than any job, and if an employer has a problem with that attitude, that company will not be my employer.

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