The Cristine M. Trahms Program for Phenylketonuria at the University of Washington is made up of a team of experienced health care professionals. Together, this team provides services to people with PKU and their families in the state of Washington.
What to Expect During Your Visit
There are several ways that the PKU clinic serves individuals and families.
Individual appointments are conducted with a medical provider (physician assistant or physician) and dietitian/nutritionist. These appointments are generally 45-60 minutes in length and include the following:
- Medical assessment. Individuals meet with a medical provider to discuss PKU management. Children are weighed and measured to ensure that they are growing well.
- Nutrition assessment. The visit also includes meeting with a nutritionist to discuss food and formula intake. Review of a food record helps the nutritionist and the patient/family understand how serum phe levels respond to dietary intake and to make adjustments to keep blood phe levels in a safe range.
Appointments with a genetic counselor can also be scheduled to discuss inheritance, family history, genetic testing, and family planning as it relates to PKU.
Group activities are offered throughout the year to provide relevant education and information to children and families, as well as to offer opportunities for social connections for those with this rare disorder. The following are planned for each activity:
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- Nutrition education. Children complete a nutrition education activity. These activities help participants to learn the skills necessary for PKU management and provide an opportunity to interact with peers who make similar food choices.
- Facilitated parent group. Parents and caregivers participate in a facilitated group to discuss issues related to raising a child with PKU. This support group helps families to problem solve and provides an opportunity to discuss day-to-day management with others who are living with PKU. It is also an efficient way to keep families up to date on developments in PKU management, including research and products.
Phone calls help interpret blood levels and make adjustments to food and formula patterns. Individuals and their families are encouraged to contact clinic staff on non-clinic days with questions about PKU and diet.
Other events are held, including periodic meetings with all age groups to provide opportunities for families to meet other children and adults with PKU. “PKU Science Night” provides families and individuals with information about the latest research.
- Billing and Insurance: Talk with your health insurance company about what services they cover, what co-pays you will need to pay, and whether you need authorization before your clinic visit. More information can be found here.
- MyChart is the confidential medical record system used for IHDD Specialty Clinics. You can view upcoming appointments, lab results, and other visit information online. Parents or guardians of children may sign up for MyChart access to their children’s online health records. You can contact your child’s clinic for more information or sign up in person when you check in for your child’s appointment.
- Interpreter Services: Specially trained medical interpreters are available for patients or family members who do not speak English. Be sure to request an interpreter, if needed, when you contact our clinic. Let us know which language you prefer to use.
Link to additional PKU information.
The Phenylketonuria (PKU) Clinic Team
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Fuki Hisama, MD Co-Medical Director -
Christina Lam, MD Co-Medical Director
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Sirisak Chanprasert, MD Attending Physician
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Terry Kho, MD Attending Physician
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Maria Wright, PA-C Physician Assistant
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Beth Ogata, MS, RDN Nutritionist
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Maryann Ruiz, MS, RDN Nutritionist
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Kait Miller, MS, LCGC Genetic Counselor
IHDD: Getting Here
The IHDD is located directly behind the University of Washington Medical Center (UWMC) at the south end of the UW campus in Seattle, Washington.
Street Address:
1701 NE Columbia Rd
University of Washington
Seattle, WA 98195-7920
Link for full directions, parking, maps and transit information.
Link to Google Maps.
The Biochemical Genetics Clinic provides evaluation, consultation, and management services to clients of all ages with a variety of genetic metabolic disorders (inborn errors of metabolism). These disorders result from an inherited inability to produce a particular enzyme or cofactor necessary for normal metabolism, generally for the production or breakdown of proteins, fats, or carbohydrates.
Phone: 206-598-1800
Link to clinic page.
