- The client/caregiver can define phenylketonuria (PKU).
- It is a rare condition in which the body does not properly break down an amino acid called phenylalanine.
- PKU is an inherited disorder.
- High levels of phenylalanine are harmful to the central nervous system.
- PKU can lead to mental retardation.
- The client/caregiver can list signs and symptoms of PKU.
- Symptoms are as follows:
- Skin rashes
- Tremors
- Jerking movements of arms or legs
- Seizures
- Mental retardation
- Attention deficit hyperactivity disorder
- Light complexion, hair, and eyes
- “Mousy” odor to the urine, breath, and sweat
- Symptoms are as follows:
- The client/caregiver can list how to test for PKU and standard treatments.
- Testing for PKU is detected with a simple blood test. Most states require a PKU screening test for all newborns. Ask your health care provider if this is done at the time of your baby’s birth.
- PKU is a treatable disease.
- Treatment is a diet that is extremely low in phenylalanine. This diet is necessary to prevent or reduce mental retardation.
- Lofenalac is a special infant formula made for infants with PKU. It can continue to be used throughout life as a source of protein.
- The client/caregiver can list measures to manage this disorder.
- Foods that are high in phenylalanine should be avoided:
- High-protein foods, such as milk, ice cream, eggs, nuts, beans, chicken, steak, and fish
- Foods, medicine, and beverages containing NutraSweet (aspartame)
- Lofenalac is a special infant formula made for infants with PKU. It can continue to be used throughout life as a source of protein.
- Seek help from dietician because diet can be very restricted. Some suggestions they may make are as follows:
- Use diluted nondairy creamer for cereal.
- Corn flakes or puffed rice are suggested cereals.
- A packed lunch could include rice cakes, grapes, applesauce, lemonade, and jelly beans.
- Safe seasonings and herbs to use in cooking are basil, cilantro, lemon juice, sesame oil, maple syrup, or honey.
- Read labels carefully for PKU listed as an ingredient.
- Work with child’s teachers, daycare providers, and so forth by explaining disorder and proper choices.
- Be informed. Start children in planning food choices early.
- Join support groups and learn from others about coping skills and foods.
Resources
March of Dimeswww.marchofdimes.com/
National PKU Newswww.pkunews.org/
National Institute of Child Health and Human Developmentwww.nichd.nih.gov/
Dietician
Support groups
References
Ackley, B. J., & Ladwig, G. B. (2006). Nursing diagnosis handbook: A guide to planning care. St. Louis: Mosby Inc.Canobbio, M. M. (2006). Mosby’s handbook of patient teaching. St. Louis: Mosby Inc.Lutz, C., & Przytulski, K. (2001). Nutrition and diet therapy. Philadelphia: F. A. Davis Company.Maternal-neonatal nursing: Lippincott manual of nursing practice pocket guides. (2007). Philadelphia: Lippincott Williams & Wilkins.Muscari, M. E. (2005). Pediatric nursing. Philadelphia: Lippincott Williams & Wilkins.Novak, J. C., & Broom, B. L. (1999). Maternal and child health nursing. St. Louis: Mosby, Inc.
Credits
Client Teaching Guides for Home Health Care, 2nd ed.© 2008 Jones and Bartlett Publishers, Inc.www.jbpub.com