Children's Health

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Your child will need regular blood tests. He or she may get tested as often as once a week for the first year and then once or twice a month throughout childhood.

It?s normal to feel a wide range of emotions when your child has an illness like PKU. You may want to join a support group. Your doctor can also help.

What treatment do adults with PKU need?

People who have PKU need to follow a reduced-protein diet throughout their lives. For a few people, treatment with sapropterin (Kuvan) may help when used with a PKU diet. Talk to your doctor about the pros and cons of this medicine.

You?ll need regular blood tests to check your phenylalanine level. Testing once a month is suggested.² If the level builds up, it can affect your IQ and your ability to learn, think, and understand.

Any woman with PKU who is planning to have a baby needs to be very careful to control her phenylalanine levels. Babies born to mothers who have high levels of phenylalanine are at risk for having a very small head, intellectual disability, growth problems, and heart problems. Having regular blood tests and following the PKU diet before and during pregnancy can help protect the baby.