Tips for Diet Management from PKU Families
Getting Organized
Organization is the key to success—and less stress!
A junk drawer or special space that works for you I keep a PKU "junk drawer" in my kitchen just for odds and ends related to my son’s diet. My drawer contains extra 9-volt batteries for my gram scale and extra blades for our two bread machines. This is where we also keep laminated info cards for each of the food distributors we do business with, the emergency beeper number for our clinic physician, the phone number of our school district’s Director of Food Service, and assorted other goodies that only pertain to our son. I find that it helps to have a separate cupboard for all my daughter’s foods, including low protein grocery store items. That way I can see at a glance what we have on hand. I have created a PKU Library for myself (a young adult with PKU). I have a binder containing all of my National PKU News issues, for easy reference. I have a second binder containing materials I obtained from my clinic, including a record of when, where, and what time I took a finger stick. I also bought top loading plastic sheet protectors to keep all my finger stick supplies in one convenient place. I keep these two binders with my Low Protein Food List for PKU on a special shelf in my kitchen above my blender. I call it my "PKU Corner." Dealing with food: shopping, ordering, storing, weighing, cooking, and baking Don’t worry too much about dry low protein products that will "go to waste." Remember that wheat starch and baking mix and all of the low protein pasta products will keep indefinitely when stored in a cool, dry place. I buy low pro pasta by the case. I try to keep several kinds on hand. I store the pastas in large Tupperware containers with pour spouts. Depending on the kind of pasta, I can store four to six boxes in one container. This takes up less storage space and because the container is airtight the pasta stays fresh. I always use a gram scale when preparing all meals and snacks for my daughter. Then there is never a question about the accuracy of her intake of phe. Besides being much more accurate, it is also much easier than measuring and having to clean measuring utensils. Take the Low Protein Food List for PKU and/or Low Protein Cookery for PKU to the grocery store with you to make sure you get all the items needed to make a certain recipe. It is also handy to "shop around" for various items from the food list. To keep your low protein cookbooks clean, keep them each in a gallon size plastic bag when open. It will protect the pages. I bought and installed a "cookbook rack" which fits under my kitchen cabinet, sort of like a space saver can opener would. On it, I keep my new food list, a small calculator, and a pen and note pad, on which I keep track of exchanges and formula measurements. I pull down the rack when preparing food and it all folds up neatly afterwards. My gram scale is kept on the counter underneath. When I prepare my work schedule (6 weeks in advance), I also pencil in my "bulk cooking days." That way I never find myself giving up an important cooking day because I have over-booked myself. Make large quantities of low protein recipes and freeze, freeze, freeze! I have even frozen Steve’s Peanut Butter (p. 87, Low Protein Bread Machine Baking for PKU). In order to keep up with my ten year-old son’s big appetite, I cook in large quantities (quadruple recipes) and freeze. He has his own freezer in the basement and it’s always filled with his favorite entrees, including their heating or microwaving directions on top. These entrees come in handy since my son’s idea of an after school snack is a hot meal. If he gets home from school before I get home from work, he makes it himself, and doesn’t have to be dependent on anyone (including babysitters.) Some examples of his usual stock:
I came up with a method for storing, measuring and transferring the Gerber Dry Rice Cereal. For new parents starting out, the dry rice cereal will be one of the first solid foods for your baby. It comes in an 8 oz. box with a spout for pouring. I learned that you cannot pour onto a tablespoon to measure the cereal without making a mess all over the kitchen counter. So we use an empty 12-oz. Instant Folger coffee jar (glass) which as a wide mouth and an easy screw-on lid. Sterilize and remove the Folger label. One box of Rice Cereal will fit nicely into the glass jar and you can always tell how much you have. Also, trim a portion of the box "Gerber Rice Cereal" to tape on the top or side to correctly identify the contents. I even leave a tablespoon on top of the jar for quick scooping and leveling. The excess just falls back into the jar without a "flyaway" mess. Menu Direct does not sell wheat starch in cans anymore, but in white plastic bags. These bags are not re-sealable, are very thin and rip very easily. I went to the National PKU News Shopping Village and found some really nice storage containers from Tupperware. Yes, Tupperware is in our shopping village. Follow the above link to access the shopping village main directory page. To choose a merchant simply go down to the bottom of the page and click on "see all merchants", and this gives you a listing of all the stores in alphabetical order. Click on the merchant of your choice and "shop until you drop"! You can also choose a merchant from the categories. When you are on Tupperware's main page click on "Rectangulars" and you will see the Rectangular Containers that are perfect for deep cabinets. I ordered the largest size, Rectangular 4, which holds 37 cups. I was able to get two bags of wheat starch in each one with some room left at the top, and I only needed three containers for a full case (six bags) of wheat starch. I stacked them back in my walk in closet and my problem is solved! They are tall, stack nicely and don't take up a lot of room. Rubbermaid makes an "Ice Cream Keeper" which is ideal for storing low protein ice cream. I recycle my formula cans and save money on storage containers. They are the perfect size for storing my low protein pancake mix, biscuit mix, Crispy Chips, cookies, etc. They don’t take up too much space and you can stack them. Get creative with your labels, or maybe your children can help make them. Keeping track I use a day-timer to schedule family appointments, including everything related to PKU management. Each family member has his or her own ink color. All of my daughter’s appointments—PKU-related or not—are written in hot pink ink so they really stand out. Likewise, my son’s are in blue, my other daughter’s are in purple, my husband’s in red and my appointments are in black. Because the appointments are color-coded it saves me writing names by each appointment. I have a quick reference chart posted on my refrigerator listing the foods I eat most frequently and how much phe they contain. It saves a lot of time when I’m in a rush. Here is how I keep track of my 6-year-old daughter's phe intake. She helped to make her own phe book by cutting out pictures of foods she can eat and pasting them into a binder. They are arranged alphabetically. Then I labeled each item with the amount she can eat and the number of phes. Since we use milligrams of phe rather than exchanges and the number were too high for her to add and figure out, I decided to work in 5 mg. increments. This means that an item with 20 mg phe would be given the number 4. She also has a board where she can keep track of the number of phes and cups of formula she has had during the day. When she wants something to eat, she will look up the item in her book and find out what number it has. Then she will move a "token" (cut out pictures of fruits and vegetables) from her envelope onto her board. When the board is full, she knows she has had all of her allotted phes for the day. If she is spending the day away from home, she carries a small notebook and places stars onto the page so I know how much she has eaten. We track our nine year-old son’s exchanges by writing them on a chalk board that we keep in the kitchen. As he has gotten older, he has been taught to mark his "E’s" on the board when he takes something to eat. We keep a kid’s blackboard in our kitchen to keep track of phe intake for the day. That way no matter who is home at any time of the day he/she can tell instantly how much room is left for low versus higher phe snacks. This really helps on those days when everyone is in a big hurry to eat quickly. I post an index card inside the kitchen cabinet with instructions for how to make formula. Any changes are made and dated (in pencil). I also write down the number of exchanges allowed, since I have two diets to worry about. Keep a diary and daily record what is eaten, everyday. Also use your notebook to record blood levels and any formula or diet changes. You can record illness, medicine given, future menus, school notes, etc. Use a datebook to indicate when to do a finger stick. Also use it to record which finger was used and where (which side of the finger) so the site can be rotated. Use "stick on" file tabs in your low protein cookbooks to mark frequently used recipes. On the front of cereal boxes, using a permanent marker, write your child’s favorite portion and the amount of phe. This also makes it easier for your child to weigh out their own cereal without having to go the food list. Keep a list of the foods most frequently eaten by your child in a small notebook for everyday, convenient reference. Keep a list of your child’s favorite foods by category (vegetables, fruits, etc.) and portions and their phe content on handy index cards. Keep these cards by your scale. I keep a daily log of my two year-old daughter’s diet—everything offered and everything eaten—amounts and mg of phe. I take the records with me on appointments with her PKU doctor. Then when we’re talking with the dietitian and I draw a blank, I’ve got something to fall back on. We use magnetic numbers on the refrigerator to keep track of exchanges. My son can look and see how many exchanges he has left for his snack at night. I purchased a Brother P-Touch electronic labeling system. All lo-pro pastas stored in containers are labeled—the kind of pasta, size of dry serving, weight of dry serving and mg of phe. This saves looking up different amounts for different pastas. Also, I use this system on some of my daughter’s favorite snacks and crackers. I label the containers in her daycare lunch-AM snack, lunch, PM snack. It saves confusion at daycare. The labels are neat and legible and last through many, many washings. We mark food containers with magic markers, adding mg phe/gm food on the top of each can or package my son will eat, and the measure and number of exchanges on the front of each package. If possible, find another family to give any low protein food that you prepared for your child and was refused. Find another parent with whom you can work together for your mutual benefit. My childhood friend also has a teenager with PKU (amazing) and we live in the same town. Together we do the following: Most of all, we have another family to depend upon in case of emergency. If one mom is sick, the other mother can step in and provide for the other child. She is also the emergency contact for my son’s school. Don’t like baking or don’t have the time? Do an exchange of services. I had a friend do the baking for me. In exchange, I did the bookkeeping and income tax for her small business. Planning ahead We keep bread and cupcakes in grandma’s freezer at all times, since she lives nearby. Also, she has low pro spaghetti and Wel-Plan Baking Mix, wheat starch, etc. Then when we visit, there is always something there for my son to eat. We keep a box of Dietary Specialties’ cookies at friends' houses we visit frequently so that they can offer my son a snack when we visit. We leave a small supply of pasta and baking ingredients at grandma’s. That allows her to make something in advance for our son’s arrival. This is a surprise for him and makes her feel good, too. Grandma and grandpa live out of the state so they bought their own copy of the Low Protein Food List for PKU as well as Low Protein Cookery for PKU. Keep a Zip lock bag of assorted fresh veggies in the fridge along with a container of homemade guacamole for a quick snack that’s easy for an older child to grab for himself/herself. My son’s best friend’s father also keeps a few of the low protein entrees that I’ve prepared in his own freezer. When the boys get caught up in what they’re doing and suppertime approaches, he can eat over easily by just popping his entree in the oven. Have plenty of "ready" food available so if your child is invited to go to the beach or some other function at the last minute with a friend, you can quickly prepare a meal to send along. This way your child won’t miss out on things because of the diet. When my son was eating baby food, I sat down and made index cards with a variety of menus with his allotted exchanges. Every day I would pull a different card and post it on the fridge so I didn’t have to stop and think of what to give him to eat. It also made things easier for dad or grandma to feed him if I was not home. They knew exactly what he could have, with no worries about his phe intake. Write out a complete three day menu with formula instruction—for all meals, snacks, drinks, etc. — right down to what type of vegetable and how much. In case of an emergency your child can be left on short notice with a friend or relative and they will be more at ease looking after your child. Make sure someone else knows where the menus are. This was important for me as a single mom. With a complete weekly menu plan like this, my daughter was able to go to a weeklong guide camp by herself at age eleven. I always replenish a fresh supply of breakfast items in the fridge weekly for my ten year-old son to microwave in the morning before school. We always have three containers available filled with french toast, applesauce waffles and blueberry pancakes. Along with one of those items he adds canned fruit or cantaloupe. Having a big hot breakfast not only gets him off to a good start, but the variety keeps him away from commercial breakfast cereals that they serve at school in the morning (and which we do not allow at home). Living with your food list Highlight (with yellow-fluorescent felt pen) special items from the food list that you use often, until you have the values memorized. Make a "crib sheet" of the phe per gram of food for the items used most frequently in your home and hang it inside a cabinet door or store in a plastic sleeve and keep by your scale. This makes for a quick, easy reference and a good way to memorize the values. We keep a xerox copy of the convenience food section and the fruits and vegetables sections of the Low Protein Food List for PKU in each of our cars to help compute exchanges for out of the house meals. I keep a copy of select sections of the Low Protein Food List for PKU in my coupon wallet to help in selecting food for my son. This keeps me from carrying around a bulky book in the grocery store. I spent two hours at my word processor typing out the foods that my son likes to eat. Then I sorted and alphabetized my list, giving me just two pages. I taped them together and had them laminated. Now I have a quick and easy, washable reference that I can have with me in the kitchen when I cook. It looks like a place mat and stores easily. I purchased a Rolodex Pocket Planner, an electronic directory by Rolodex. Instead of making entries of names and phone numbers, I entered all of the foods that my daughter likes to eat with the phe count. I first entered the food name and the serving size, then the number of exchanges in place of the phone number. Once entered, you view each in alphabetical order, or pull up what food item you are looking for by typing the first few letters of the food item, entering or scrolling in alphabetical order. Once all of your food items are entered, you must pull up any one you want. I still use the Low Protein Food List for PKU for cooking; and figuring measures of food items to lengthy to enter into my rolodex. You can purchase one in must about any electronics or office store. Mine has "10K" memory, which is about 700 food items. It is only 2 x 4 inches, small enough to carry everywhere you go and was only $26.00. So it is in a handier form for use outside of our home, we took the Low Protein Food List for PKU and first reduced a back-to-back copy (for our personal use only) to fit into a 3 x 5 format, for our personal use only. (The print is still quite readable at that size.) We then laminated each page on both sides. This allows for easy cleaning. Then we punched a single hole in the upper left-hand corner to insert a small chain to hold it all together. This makes it easy to flip through. Also, prior to laminating, we used a fluorescent yellow highlighter pen to indicate items mused most often. This reduced size list fits very well into my purse, which allows me to make instant reference at any time or any place. Return to contents of Tips for Diet Management from PKU Families
I also got a few other nice things while I was at the Tupperware site. Click on "Storage" and you will see the "Jumbo Bread Server," this is a very nice container that holds a loaf of bread and stores it nicely. I got some really nice pizza containers from the "Microwave" section. They hold one large slice or two medium and you can re-warm the pizza in the microwave! My daughter takes her low protein wheat starch pizza from Menu Direct to school for lunch (and my son, who doesn't have PKU also takes his pizza). These containers are dishwasher safe and are made very well.
Last update: 03/01
National PKU News: www.pkunews.org
E-mail: schuett@pkunews.org