Community Discussion Forum New to Untreated ?

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  • #6192
    Avatar of Anne Mc
    Anne Mc

    Hi ive just signed up and im researching on behalf of someone else.Has anyone out there got any experience of living with PKU without any form of treatment i.e diet or supplements?

    Avatar of Tracie

    Hi Anne,
    I think its great you are trying to find out info for the person you are speaking of.
    I know you are limited on giving out info on him or her.
    I would assume they were not caught at birth or may have a retardation or if not maybe Hyperphe?
    I myself am Borderline PKU,and can have up to 2700 PHE’s a day or 60 grams of protein.
    It is alot for a PKUer. nMay i ask if he or she is on a diet?
    I myself am.I suffered from alot of different nMental problems.
    IE: Aniexty,moodiness,Anger,PKU seizures,and worst of all Anorexia.
    So there maybe some signs that you may see.
    I hope i was some help.
    Take care,and thanks for caring.

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