PKU directory - PKU information sources and services

Looking for a PKU specialist, dietitian or nutritionist, a supplier, or PKU association in your area? Discover them here.

Read More

 
 

Facts

It was easy to control my child’s diet when he/she was a baby, but now he/she is about to begin childcare and is coming into contact with other children I worry that he/she will eat something he shouldn’t.

As your child becomes more independent, it’s not possible to be with him/her every

Read More

 
 

How does prescription formula differ from standard formula?

Babies with Phenylketonuria (PKU) receive a special formula that contains every

Read More

 
 

Help your child understand PKU and his/her special needs

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.
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.

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: becoming accustomed to 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.