When your child is young, you naturally handle everything—preparing their meals and medical food/formula, managing appointments, and working with their clinic team.
You’re their advocate and the one making sure they get the care they need. As they grow, it’s important to involve them more and more in their own PKU care, so they can start taking ownership of their health.
Building healthy routines early makes managing PKU easier for both you and your child. These routines become the foundation for how your child will manage their PKU as they grow up. The habits you help them build now will serve them well into their teenage years and beyond.
Help your child stick to a schedule for going to bed and waking up, and let them take naps when they need them.
Make sure your child is eating low-Phe meals at regular times throughout the day and stay on the medical food/formula routine you and your clinic team decide on.
Help your child follow your PKU clinic team’s instructions and make sure all tests or procedures are performed when recommended.
Here are some practical steps to help your child develop confidence and skills for managing their PKU as they grow.
It’s not always easy to talk about PKU. It’s best to inform those caring for your child, such as teachers, school administrators, caregivers, or counselors. Let them know what support your child may need.
Get advice from specialists on better living with PKU
