PKU.com Community Discussion Forum Parent support phe levels for nonpku or hyperphe 6 wk old

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  • #7199
    Avatar of Jennifer
    neurotic mom
    Member

    my daughter is 6 weeks old…we were told that she was nonpku, but her levels keep going up…they went down last week, but are now at a 7, 2 weeks later…i’m freaking out and don’t know where to turn because the doctor at the metabolic clinic still doesn’t want to put her on the formula…what would you advise?

    #7206
    Avatar of Breanna
    BreaMarie91
    Member

    If her levels are up, the natural way of bringing them down is to start giving her the metabolic formula and less regular baby formula/breast milk. Regular baby formula is packed with Phenylalanine, which if she’s drinking that, that would explain why her levels are up. Breast milk is lower in phe, but she still might need the metabolic formula to get her levels down. I don’t know why the doctor would say she doesn’t have PKU, if her Phe levels are high, then I don’t think there’s another explanation.

    #7214
    Avatar of Amber
    cjqa2007
    Member

    Personally I would push to have the baby tested again in a week or so, the blood phe amount should show a definate increase if on normal diet. I would rather be safe than sorry, My son’s levels have never been higher than a 7 and that was at 2-3 weeks old. States are all different as to what the values have to be to consider a baby diagnosed as hyper phe or pku. So your state may be one of the ones where the blood phe amount has to be higher. Good luck!

    #7623
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi there,
    I would definitly insist on getting her tested,until you as Mom is satified.
    Be the voice for your child. nYou can do it.Plus the sooner you know she can start on the proper formula.
    Hang in there, and be strong.
    Take care, nTracie-PKU

Viewing 4 posts - 1 through 4 (of 4 total)
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