As an infant you started a special diet and you have been seen regularly by doctors, dietitians, health visitors, psychologists and every other kind of -ist. It is due to the fact that PKU can be a serious condition unless it is properly treated.
Good treatment allows normal health and development.
Most of you will want to know what to do now. This leaflet is to help with some of the many questions you may have about the future. You should continue to follow what your doctor or dietitian has advised. Most people believe it is best to continue with the low phenylalanine diet, including adeqaute amounts of protein substitute, and to have regular blood tests. However, you are now taking control of your own life and the decision is yours about your treatment after being informed of the risks of high phenylalanine levels.