Community Discussion Forum Generation PKU HiYa Reply To: HiYa

Avatar of Maddy

wow, you have it tough. PKU will cause alot of patience, understanding, and educating. I am 14, and i have only just lernt to accept it. When i was young i used to sneek normal food ALL THE TIME! and when my mum asked me if i had, i allways denied it. Does your child have classical PKU? how much Phenylalanine can he eat per day? Having grown up with PKU, i have been excelent in school, i have a great social life, and everything is good. i do occationally get REALLY annoyed with the diet, and am temped to quit, but that was more when i was young. Not many people know i have PKU, but i chose to hide that from my classmates, if someone asks me then i’ll admit, but if someone asks why i dont eat meat or anything, i say i am a bit more than a vegan through no choice of my own. Since your son is a baby, i think it’s really important that as many people that are close to you, ever gonna be with your son on his own, or one of his nursery teachers or something, that they all know fully about the diet! i really do wish you luck! i will keep in contact through -maddy

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