Unfortunately what you say is true. nBecause the heel prick test was only used on all new borns after a certain date it is difficult for the medical profession (s) to accurately predict the long term effectiveness of the treatment for PKU. nOn a positive note Im reading comments from younger people who apart from having a very restricted diet appear to be living life to the full. nThe gentleman I help look after never had that opportunity. nHe is quite severly intellectually disabled and requires a lot of support.He is dependant on staff for many of his everyday activities and because he never had the early intervention we will never know what his true potential could have been. nHe is back on a restricted diet and he does appear to be enjoying life and becoming more active and communicative. I feel very honoured to know him and very sad to know what could have been. I love this website because it is so filled with hope and Im fascinated by all the different stories and successes.