Hello People, Iam "Snuffles" I have PKU all my life and was not easy for my parents and they had the fair share of issues and hardship. Me my little head is stuffed...as on a Brain scan in early adulthood they found various scar tissued in the middle of brain!! The Doctor's concluded that was the damaged areas I got from PKU, how bad it was, they cannot explain the extent of damage done. It was smack bang in the middle. Oh yes thank having it picked late I now have a whole truckload of aliments. Plus the countless amount of medications, doctors, specialist appointment vists is a from my point or view is a parents's nightmare as I got older!!!The Doctors and Medical Professionals know the curtail the damage of pku by get it treated from brith. But.....They do not know the full extent of the absence the low phe diet in those who's treatment were delayed or got retarted before treatment. I had been though the diet, but when I got off it a few years after my body started breakdown with various aliments mental and phyical,what headache experince for my parents!!!! Until now....they are still researching by the medical people, why those their pku picked up late had more phyical and mental problems after a good few years after they were taken off the diet.