Community Discussion Forum Adults and PKU Off the diet Reply To: Off the diet

Avatar of Breanna

Alot of the reasons why some adults are off their diet is because as children years ago that was what doctors believed. Years ago (probably before I was born I think) doctors were new to PKU and they thought that because the brain stops developing between 4-6years that it would be okay to stop the diet. So they started taking kids off the diet only to find out that being off the diet still effected your brain no matter how old you are.
As for the reason why they are still of diet even though doctors now know that the diet is for life, that is something you would have to ask some of the adults who are off. From what I’ve heard from a few adults I’ve met, some of them (not all) were never contacted by their clinics and told to be back on diet after they lost contact because they were off.
I’m not off diet and like you guys I don’t plan to ever go off. But this is just what I know. nBreanna n16 w/CPKU

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