What We Offer
Medical assessment. Children are weighed and measured to ensure that they are growing well. Blood is drawn to measure serum phe. Children are examined by a developmental pediatrician.
Nutrition assessment. Families meet with a nutritionist to discuss food and formula intake and review their child's food record. This food record helps the nutritionist and the families to monitor phe intake and to understand how serum phe levels respond to dietary intake.
Nutrition education. Children complete a nutrition education activity. These activities help participants to learn the skills necessary for PKU management. Parents meet as a group with the social worker and other clinic staff to discuss issues related to raising a child with PKU. this support group helps families to problem solve and provides an opportunity to discuss on-going issues surrounding PKU management.
Developmental testing. Testing is recommended for all children in the PKU Clinic. Children are first tested at around 3 years of age. They are re-tested approximately every three years into adulthood. For the appointment, children and their families meet individually with a psychologist at the PKU Clinic.
Individualized care is provided to each family
At each clinic visit, families meet with the pediatrician, nutritionist, and social worker. After each visit, a follow-up phone call is made to help families interpret blood leves and make adjustments to food and fomula patterns.
Families are encouraged to contact clinic staff on non-clinic days with questions about PKU and the diet.
Clinic staff are available for private appointments.
Family support is built into each clinic visit
The children meet with the nutritionist to work on a nutrition education project. This provides an opportunity to interact with peers who make similar food choices. children are able to discuss strategies to common problems.
The parents meet in a seperate group to discuss issues related to raising a child with PKU. This is also an efficient way to keep families up-to-date on recent developments in PKU management, including research and products.
Periodic meetings with all age groups, including a yearly picnic, provide opportunities for families to meet other children and adults with PKU. An annual "PKU Science Night" provides families and individuals with information about the latest research.
Nutrition education is a focus for children and families
Each clinic session focuses on a concept that is important to PKU management. Children participate in an age-appropriate activity.
Parents are provided with information about the activity to help reinforce the lesson at home.
The Food Co-op provides families who attend clinic with the opportunity to sample new low protein products. A small supply of low protein pasta, crackers, and baking mixes is kept on hand as well.