Medical Treatment of PKU
PKU is a chronic condition that requires ongoing management and support of medical staff. Once diagnosed (usually within 3 to 5 days of birth), a newborn is referred to a PKU specialist. In Minnesota, PKU patients may be referred to the University of Minnesota PKU Clinic.
The children are placed on a highly restricted and carefully monitored diet including a protein supplement. The supplement comes in many forms but a formula is the most common treatment for children with PKU. Treatment also includes routine exams to track growth and overall health; blood tests/evaluations and regular developmental assessments performed by licensed psychologists. The individual health plan is adjusted as necessary throughout the life of the individual with PKU.
For certain individuals a prescription medication, Kuvan from Biomarin, is available for treating PKU. Use of Kuvan may allow a more liberal diet for some patients with PKU. Speak with your clinic if you think Kuvan might be right for you or your child with PKU.
Aside from medical treatment, there are many social services that make management of PKU more successful. It was the demand for this level of support that established a clear need for the PKU Foundation.
