My daughter Amber is 10 and just started Kuvan today.She takes 9 pills a day and we are hoping that she is a responder. When she was little her levels stayed 2-4. They thought she could have a mild case and so we allowed her to eat bread,cheese,drink milk and stopped the formula. Even then her levels stayed at 4-6 range for years. A couple years ago we quit monitoring her levels as much, well come to find out the older she got the higher her levels got. Through this time period she has had problems in school, behavioral and nervous problems. They did a DNA analysis and she has classic PKU with a baseline level of 9-11. It took 6 months after but we finally started her on the Kuvan today!! If it works her diet will probley stay the same, but if it don't then we will have to change it and take away foods she has loved for years. Please pray for her and i will blog when i find out if its working for her..