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dreddyclinic.com - Phenylketonuria (PKU)
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Phenylketonuria - PKU

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Self-care

Living with PKU can be difficult. The combination of a limited diet, expensive groceries, regular blood tests and frequent visits to the doctor can make for trying and frustrating times. 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. And read books and cookbooks specifically written for people with PKU, such as Low Protein Cookery for PKU by Virginia Schuett.

  • Learn from other families. Ask your doctor how you can link up with other parents who have successfully managed their child's PKU. Talking with others who have mastered similar challenges can be very helpful.

  • Get help with menu planning. A registered dietitian or nutritionist 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 companies in your area 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.

 

 

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Last Modified : 03/15/08 01:49 AM