Viewing 7 posts - 1 through 7 (of 7 total)
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  • #6038
    Avatar of kelly
    kdeemcbell
    Member

    Hi there. I am trying to educate myself more about PKU. My daughter, 16 months old, has CPKU. I am just trying to find out new information from people who have been in similar situations. Any advise or correspondence would be lovely!
    KDee

    #6039
    Avatar of Momofadyangel
    Momofadyangel
    Participant

    You have come to the right place to get new info on PKU. I love coming to this site to read that when I have a minute or two!

    #6042
    Avatar of Breanna
    BreaMarie91
    Member

    Kdee,
    If you ever have any questions feel free to ask me if you want. If I can help in anyway I’ll be glad too! nBreanna n16 w/CPKU

    #6045
    Avatar of patwences
    patwences
    Member

    I am totally new here need help scared for my 16mth old and need answers……im told her first 3 test were positive then 1 neg now it was ignored till now…now that she cannot eat meat or milk w/out getting very sick and signs of delayed groth and failure to trive… can you have a 16 mth old tested and it be accurate??????????

    #6046
    Avatar of Breanna
    BreaMarie91
    Member

    Hi, nThe first thing I think you need to do is get in contact with your baby’s doctor and you need to find some sort of specialist for PKU to help you. If you let me know what state you live in I might beable to help you locate a clinic that deals with PKU.
    If she has tested positive for PKU 3 times, I would say your baby does have PKU and you would need to get her a special metabolic formula. She will need to be on a special diet with excludes meat, diary, most grain, beans, nuts and mainly foods high in protein. She will need to be on a low protein diet from now on for the rest of her life. Regular blood tests will need to be taken to monitor how much Phenylalanine is in her blood aswell.
    I’m here to answer any questions you have. nBreanna n16 w/CPKU

    #6047
    Avatar of Breanna
    BreaMarie91
    Member

    I just wanted to let you know, I did reply to you but for some reason the computer is telling me that my reply will appear in 24-48hrs. If you ever have any questions for me feel free to ask!
    I wrote in my other post that if you tell me where you live I might beable to help you locate a clinic that specializes in PKU. Your daughter will need to be put on a special low protein diet and she’ll have to drink a special metabolic formula aswell. nBreanna n16 w/CPKU

    #6048
    Avatar of Breanna
    BreaMarie91
    Member

    If you live in the US then this is a link you can go to:
    http://www.macpad.org/page.aspx?id=92187
    Here you should beable to locate a clinic near you. Give them a call, explain your situation and they should beable to assist you. nBreanna

Viewing 7 posts - 1 through 7 (of 7 total)
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