Community Discussion Forum Generation PKU Diet Reply To: Diet

Avatar of Maddy

once the kids were taken off at five, they realized, as a teenager or older, they were having serious brain developmental problems, and realized, that although their brains had mostly compleated growing, that the condition could still effect it. the only way they could prevent mental disability’s was to keep the children on the diet.
i HATE having PKU, but it’s part of my life and i dont know ani other lifestlye. When i was young i ALLWAYS threw fitts about it, but as i got older i just realized, their was nothing i could do. Going off the diet wasn’t going to improve anything. So here i am 14 and fed up with it. i have many concerns about my future with PKU, but i try to accept anything that comes my way. ALthough it’s INCREDIBLY hard, i try not to let it dominate me. i just want to continue as normal. -maddy

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional