Coping and support

Living with PKU can be challenging. These strategies may help:

• Stay informed. Knowing the facts about PKU can help you take charge of the situation. Discuss any questions with your pediatrician, family doctor, geneticist or dietitian. Read books and cookbooks specifically written for people with PKU.
• Learn from other families. Ask your doctor about local or online support groups for people dealing with PKU. Talking with others who have mastered similar challenges can be very helpful. The National PKU Alliance is an online support group for adults with PKU.
• 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.
• Plan ahead when you eat out. A meal at the local restaurant 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. But you may want to call ahead and ask about the menu or bring food from home.
• 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 or 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.
• Let your child help 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 meals with the whole family in mind. A cupboard full of restricted foods can be tempting to a child or adult with PKU, so try to focus on foods that everyone can eat. Serve stir-fried vegetables that are lower in protein. If the other family members wish, they can add peas, corn, meat and rice. Or set up a salad bar with low-protein and moderate-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 lower protein crackers for the car. Take fruit 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 can be surprisingly accepting of the PKU diet — especially when their parents are positive problem-solvers.