Zoey is our granddaughter whom we have parented since she and her twin brother (who does not have PKU) were 3 years of age, parents having addiction issues. Zoey was detected on the newborn screen and placed on diet within 10 days of life. She uses medical foods, having a protein restriction of 7 grams of protein before being able to use Kuvan which raised it to about 11 grams. She has used her special protein milk for years and is currently a lovely young girl, attending Southern Oregon University in her second year. The need for medical foods and special protein has been imperative for her up until one year ago when she was able to try an injectible medication Palynziq,
- Children’s Hospital of Wisconsin
- Council for Pediatric Nutrition Professionals