Lifelong management of PKU may be difficult, but it is important to do in order to protect your brain. That’s because toxic buildup of phenylalanine (Phe) in the brain can cause physical changes that lead to intellectual and behavioral problems.
Although some symptoms are permanent, many can be improved if blood Phe levels come back under control.
Start PKU management early. PKU should be managed from birth with all available options to control blood Phe levels.
Manage PKU for life. PKU is a lifelong condition that requires lifelong care.
Try this PKU Clinic Discussion Guide to help your conversation along