Phenylketonuria (PKU)

Home Treatment

Home treatment for phenylketonuria (PKU) focuses on managing phenylalanine levels throughout life.

Follow the dietary guidelines Learn about the disorder and explain its effects to your child. Stress the importance of staying on the PKU diet,and involve your child in selecting appropriate foods. It is a good idea to seek suggestions from a registered dietitian for ideas about types of foods, recipes, and how to ensure your child's nutritional needs are being met. Adults with PKU will also benefit from this information. Be aware that foods low in phenylalanine often cost more.

Work with your health professional Make sure to set up a schedule for checking blood phenylalanine levels. Periodic testing is needed throughout life; the frequency depends on your age and severity of enzyme deficiency.

Manage maternal PKU If you are a woman with PKU who is considering pregnancy, follow the recommendations for preventing and managing PKU. High levels of phenylalanine in the mother could cause the baby to be born mentally retarded or with other health problems, such as an unusually small head (microcephaly). Following the PKU diet both before and during pregnancy will help keep your unborn baby healthy. Women with PKU should be tested for PKU levels twice a week during pregnancy.

Seek genetic testing If you have a family history of PKU, talk with your health professional about a genetic test. If you have a child with PKU, it may be helpful to seek genetic counselling before attempting another pregnancy.

Join a support group If you or your child has PKU, you may want to join a support group or talk with families who are dealing with similar issues. Remember that it is normal to have feelings of anger, depression, guilt, and frustration when living with PKU or when caring for someone else with the condition. Don't be afraid to talk with your health professional about such feelings. It may also be helpful to encourage your child to participate in a support group in which he or she can express personal feelings.

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Author:	Amy Fackler, MA Carrie Henley	Last Updated: May 26, 2006
Medical Review:	Michael J. Sexton, MD - Pediatrics Thomas Emmett Francoeur, MDCM, CSPQ, FRCPC - Pediatrics
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