Community Discussion Forum Adults and PKU Maternal PKU Reply To: Maternal PKU

Avatar of Danielle

Hi Everyone,
I’m 23 and was diagnosed with moderate pku at birth. I was on the pku diet until about age 14. Gradually, my doctors seemed to be less and less concerned with my phe level. They said that by the time I was an adult I wouldn’t have to worry about pku, only if I were to become pregnant. As a child I struggled a bit in school, but that could be blamed on my other health problems and the fact that my dad moved us around so much. Once we settled down and I was healthy, my grades went up and everything seemed fine. Currently, my IQ is 126, which is pretty normal.
After many years being off the diet, I’m trying to get back on, mainly because I think I’m pregnant. It’s really hard and I’m constantly worrying about what I eat and if I’m going to hurt the baby. I’ve seen a dietitian and I’m trying to find and order formula and lo pro food.
I have a couple questions for orlan65, pinklady and any other mothers with pku:
What are/were your diets and lifestyles like during pregnancy? nDo you have any advice for me?

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