Community Discussion Forum Generation PKU soooo…who wants 2 talk? Reply To: soooo…who wants 2 talk?

Avatar of Peggy

rjharr, well, the doctors at the hospital could not pin point what caused my siezures. But later in life, I realized it was diet related. I was 13 years old and rebelling against my diet. I was never completely off diet, but I would eat a lot of french fries in large portions every day. In addition, I would also eat regular pastas and bread and I was not drinking my formula. All I can recommend is as your daughter gets older, encourage her to maintain her diet as best as possible. In my late twenties, I am now on track again and the difference in my learning abilities and my personality is just like night and day. I drink my formula every day and I have limited myself to potatoes at least a couple times a week in smaller portions and I only eat low protein pasta when I want noodles.

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