Phenylketonuria (PKU) Program

Children's Wisconsin is one of only three centers in Wisconsin that offer diagnosis, assessment, medical nutrition therapy, genetic counseling and ongoing dietary and medical care to children and adults with phenylketonuria (PKU). We will help develop a care plan that works best for patients with PKU and their families.

The PKU Program follows about 100 children and adults with PKU. Our experienced team evaluates and treats each child, bringing together specialists who work together to determine the most effective care and treatment plan.

Meet our team

The core PKU team includes doctors, a nurse practitioner, registered dietitians and a genetic counselor who specialize in treating patients with PKU. In addition to the core PKU team, a social worker is available to all PKU patients as needed or requested.

Nurse practitioner: Stephanie Offord, APNP 

Registered dietitians:

• Jessica Balliet, RD, CSP, CD
• Kari De Fouw, MS, RD, CD, CNSD
• Haley Lynn, RD, CD

Social Worker: Liz Horning, MSW, APSW

What our team members do

In addition to doctors and nurse practitioners, patients in our program also are cared for by:

• Genetic counselors, who have a master's degree and are either board eligible or certified by the American Board of Genetic Counseling. Genetic counselors help counsel patients and families about PKU, inheritance risk, independence transitioning and maternal PKU.
• Metabolic dietitians, who are registered dietitians with additional training in inborn errors of metabolism, including PKU. They assess nutrition adequacy, growth, weight gain, lab values and diet history to develop an individual nutrition care plan for each patient. Additionally, metabolic RDs provide education and counseling to patients and their families to help carry out the specialized nutritional plans for each patient.
• Social workers, who help patients and their families deal with the emotional and mental aspects of a PKU diagnosis and the subsequent treatment. At Children’s Wisconsin, we understand how stressful it can be when someone in the family has a medical condition, and our social workers are trained to be an open ear and a strong support resource during and after care.

Referrals to other specialists

The PKU team also makes referrals to other specialists in order to provide the best possible care for our patients. Those specialists may include:

• Psychologists
• Neuropsychologists
• Feeding specialists
• Other medical professionals

Educational patient events

In addition to clinical care, the PKU team hosts educational patient events each year. These events provide hands-on experience with preparing low-protein foods. They also give people with PKU and their families an opportunity to meet, talk to and network with other families who are affected by PKU.

Location

The PKU Program is located in the Genetics Center on level 1 of the Curative Care Network building, across the parking lot from Children's Wisconsin in Milwaukee. Enter the north door (which faces the Children's Wisconsin parking structure), and take the elevator to level 1. Click here for directions.

Parking: Free parking is available in the Children's Wisconsin visitor lot or parking structure. A voucher for free parking is available at Curative.