Community Discussion Forum Adults and PKU Adult Late Diagnosed As A Child Reply To: Adult Late Diagnosed As A Child

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 intake. 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 good/normal.
After many years of eating whatever I want, I’m trying to get back onto a pku diet, 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 have a couple questions for pku1962, smorff, and any other mothers with pku:
What kinds of effects did your pku have on your children? nWhat were your diets and lifestyles like during pregnancy? nDo you have any advice for me?

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