TEXT SIZE
Share your smarts!
Do you have a tip, recipe or insight that might help others with PKU? Tell the PKUniverse now.
PKU Blogs
Connecting with someone who knows what you are going through can help.
Follow a blogger in the PKUniverse!
Keeping Phe low
As the parent of a child with PKU, you must make sure your child's blood Phe levels stay low. This is the only way to protect your child's brain and avoid the problems of high Phe, like mental retardation.1,2
For children with PKU, good brain care starts with diet. Special Phe-free formula and low Phe foods give your child the nutrition and Phe control he or she needs to grow up healthy.1
Infants and breastfeeding
You can combine Phe-free formula with breastfeeding for an infant with PKU.2 This gives the baby the benefits of breastfeeding, while keeping their Phe levels low. Talk with your child's doctor and dietitian about this option.
PKU medication
Some people can also take a medicine that can help lower Phe for people with PKU.14
Raising a PKU-savvy child
It's important to teach children with PKU about the disease early. Children need to know that they can't eat what everyone else does, and why. They also need to understand how important their treatment is. They have to learn to be careful about their diet. If they take medicine for PKU, they have to be sure to take it the right way each day.
Over time, you'll show them how to plan meals and figure out the Phe level of various foods. You'll teach them how to prepare their own Phe-free formula. You'll show them how to work with their doctor and dietitian to get the best advice. That way, even when they're not with you, they can do what's best for their healthy growth.
