Tips for Diet Management from PKU Families

Think positively

• Compliment your child often on his or her "healthy" diet; think in positive terms.

• Keep a positive attitude. For instance, I always feel thankful to my children for my bread maker and other fun kitchen gadgets and appliances that I buy to make their food. Without this necessity I would not own lots of nifty gadgets!

• We view our boys' PKU (our youngest and oldest both have it) not as an illness or a hindrance; it is just the way it is. We must take what we get in life and do the best we can!

• At our house, we eat better because of my daughter's diet habits. Fresh fruit and vegetables are a must in our house, and everyone has learned to enjoy a great variety. We make a point of trying unusual fruits and vegetables-for example, purple potatoes and different kinds of flavorful, sauteed mushrooms. It's fun for all of us.

• I try never to say I can't do something because of the diet. With imagination and effort I have found in 13 years that my daughter can do just about anything while still staying on her diet.

• Don't ever let the PKU diet prevent your child from participating in activities. My nine-year old son goes to scout camp during the summer and is active with his travel soccer team. We can always figure out a way to accommodate his special diet!

• We've never treated our eight year-old special or different because of his diet, but rather we've treated it just matter-of-factly. Some people can't have chocolate and some can't drink milk. Our son just has a bigger list of things he can't have.

Find support and ideas from other families

• Join the Internet PKU Listserv Group. To join, send an e-mail message to parent coordinator Linda Gilbert: macpku@aol.com. This is a large group of families, persons with PKU and some professionals, where everyday you will find tips and recipe, have your questions answered, and find support when you need it.

• Go to PKU get-togethers. Sample new low protein foods and recipes. Food exchanges are great! Share tips with new parents who don't have as much experience in managing the diet.

• Find another child with PKU, who is similar in age to your own child and doesn't live too far away. Cultivate a friendship. Recently, I was getting myself down thinking of how my 3 1/2 year old daughter was being excluded from parties at her preschool and just about anything having to do with food. So I contacted one of the mothers whom I had met at the Genetic Center where we live. She has a daughter the same age as mine. I decided to have them over, and it was the answer to my prayers. The two girls hit it off great. My daughter was very excited to know that her new friend also had to drink special milk and eat special foods. It gave my daughter a real boost. Now, whenever she starts getting down, I invite her friend over and we usually make a special treat, like PKU cookies and cupcakes and the girls get a big kick out of helping prepare their special foods.

Try new recipes and involve your children in cooking

• Try setting a goal of trying at least one new recipe each month, freezing 1/2 cup quantities. The diet can get boring without a concerted effort to try new things.

• New recipes can be found everywhere. Look in the newspaper (food section), magazines, vegetarian cookbooks (especially any "Vegan" section).

• Let children help make low protein foods at a young age. They have fun adding the ingredients in the bowl. They especially love cookies, cutting them out with different shapes.

• I always make a special effort to bake a low protein item when my child with PKU is available to "lick the beater" since he isn't always able to do it as much as his non-PKU Sister.

• We try to involve our eight year-old son as much as possible. He loves to use the scale and measure with the measuring spoons and cups. He also loves to run the bread machine. He makes his own bread (with a little help from mom). He also enjoys helping make his food and ours, too.

• We try to let our son "help" as much as he wants in food preparation. Since he is just four years- old, it usually means a lot of extra cleanup, but it helps him understand and helps reinforce the need for measuring at all times. We try to keep a 1/4 cup measure handy whenever mealtime comes around so he can help measure cereal, coffee rich, snacks, etc. and/or see us measuring it out.

• Try to involve your older child as much as possible in the selection of foods you are planning to make for meals. Let him or her go through Low Protein Cookery for PKU and choose recipes.

And other words of wisdom

• Try not to make food a reward in your home.

• Try not to make every task related to the diet into a chore. Get other children in the family and fathers involved, too.

• It's very important to recognize what is within your control and what is not. My daughter's level has a tendency to increase when she has an infection or cold. This is an area where my control is limited. I do tend to take her to our family doctor at the earliest sign of some kind of infection-ears, sinuses, etc. But recognizing that illness, for the most part, is out of my control, really helps when her phe level comes in a little too high.

• RELAX! Enjoy your wonderful child.

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