Facts for children with PKU
Phenylketonuria or PKU is an inherited disorder, which prevents the body from breaking down Phenylalanine (Phe), an amino acid found in food proteins. High levels of Phe in the blood can cause lasting damage to the brain. The special diet begun at birth must continue throughout life. With proper blood Phe level management, children can expect to develop normally.
Kids with PKU need to follow a low Phenylalanine (Phe) diet. This will include vegetables, fruit and special low-protein breads and pastas, boosted by a special Phe-free supplement or substitute. Food high in protein such as cheese, meat, fish, chicken, eggs, beans and nuts must be avoided.
Initially, Phenylalanine (Phe) blood tests may occur once or twice a week as new foods are gradually introduced to your child’s diet. If the disorder is managed properly, blood Phe levels will stabilise and testing frequency may reduce. Your PKU specialist will advise and recommend along with your dietitian or nutritionist, additional ways to help lower blood Phe levels.
Learning how to calculate Phenylalanine (Phe) consumed through diet requires practice. Help your child take steps towards independent living by involving him/her in keeping a food diary. Teach him/her how to describe quantities, like ‘half a slice of low protein bread’ or ‘one small banana.’ Your dietitian or nutritionist will also help you to teach your child how to recognise the right food.
Growing up with PKU: PKU management
Learn about changes to your child’s diet as he/she grows and the steps you can take to help him/her move towards independence and wellbeing.
Also see Confirming a diagnosis and The science of PKU for a medical explanation of PKU and learn about the benefits of a special diet allowing for blood Phenylalanine (Phe) levels control.
