Coping and support

By Mayo Clinic Staff

Living with PKU can be difficult. The combination of a limited diet, expensive groceries, regular blood tests, detailed food records and frequent visits to the doctor can make for trying and frustrating times. If you have a child with PKU, it can be difficult to explain why he or she can't eat "normal" foods. And, mealtimes and snack times can be a battle. The following strategies may help:

  • Be informed. Knowing the facts about PKU can help you take better charge of the situation. Discuss any questions with your pediatrician, family doctor or a doctor who specializes in medical genetics. Read books and cookbooks specifically written for people with PKU.
  • Learn from other families. Ask your doctor about local support groups for people dealing with PKU. Talking with others who have mastered similar challenges can be very helpful.
  • Get help with menu planning. A registered dietitian with experience in PKU can help you devise delicious low-phenylalanine dinners. He or she may also have great ideas for holiday meals and birthdays.
  • Try to eat out. A meal at the local cafe or neighborhood pizzeria gives you a break from the kitchen and can be fun for the whole family. Most places offer something that fits into the PKU diet, even if it's just french fries and salad. But you may want to call ahead and ask about the menu or bring food from home. Some restaurants will even agree to heat up a low-protein product, if you make arrangements in advance.
  • Find sources of financial aid. Ask your doctor or dietitian if there are programs or insurance plans that help cover the high costs of formula and low-protein foods. Also, see if your local school lunch program will accommodate special dietary needs.
  • Don't focus on food. Encourage children with PKU to focus on sports, music and favorite hobbies, not on just what they can and can't eat. Also consider creating holiday traditions that center on special projects and activities, not just food. At your house, Thanksgiving can revolve around making a crafty cornucopia, not just eating turkey.
  • Let your child manage his or her diet as early as possible. Toddlers can make choices about which cereal, fruit or vegetable they'd like to eat and help measure out portions. They can also help themselves to pre-measured snacks. Older children can help with menu planning, pack their own lunches and keep their own food records.
  • Make your grocery list and your meals with the whole family in mind. A cupboard full of restricted foods can be tempting and irritating to a child or adult with PKU, so try to limit the number of forbidden foodstuffs. Also, try to avoid making separate meals that single out a child with PKU. Instead, make one meal for the whole family, even if the child with PKU can't eat everything. Serve stir-fried vegetables with meat, cashews and rice on the side, or set up a salad bar with low-protein and high-protein options. You can also serve the whole family a delicious low-phenylalanine soup or curry.
  • Be prepared for potlucks, picnics and car trips. Plan ahead, so there's always a PKU-friendly food option. Pack dehydrated fruit snacks, raisins and crackers for the car. Take fruit shish kebabs or vegetable skewers to a cookout, and make a low-phenylalanine salad for the neighborhood potluck. Other parents, friends and family members will likely be accommodating and helpful if you explain the dietary restrictions.
  • Talk to teachers and other staff in your child's school. Your child's teachers and cafeteria staff can be a big help with the PKU diet if you take the time to explain its importance and how it works. By working with your child's teachers, you can also plan ahead for special school events and parties so that your child always has a treat to eat.
  • Maintain a positive food attitude. When children know nothing but the foods they are given, they are surprisingly accepting of the PKU diet — especially when their parents are positive problem solvers.
Nov. 17, 2011

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