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 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. It's also important for children who have PKU to get regular dental care, because amino acid supplements can sometimes wear down the teeth.

Manage maternal PKU If you are a woman with PKU who is considering pregnancy, follow the American Academy of Pediatrics (AAP) recommendations. 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 baby (fetus) 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 doctor about a genetic test. If you have a child with PKU, it may be helpful to seek genetic counseling 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.

Go to previous section	Go to top of page	Go to next section
Author:	Debby Golonka, MPH	Last Updated: February 27, 2008
Medical Review:	Michael J. Sexton, MD - Pediatrics Thomas Emmett Francoeur, MDCM, CSPQ, FRCPC - Pediatrics
© 1995-2008 Healthwise, Incorporated. Healthwise, Healthwise for every health decision, and the Healthwise logo are trademarks of Healthwise, Incorporated.This information does not replace the advice of a doctor. Healthwise disclaims any warranty or liability for your use of this information. Your use of this information means that you agree to the Terms of Use. How this information was developed to help you make better health decisions.