Community Discussion Forum Parent support keeping track of phe levels

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    Avatar of Jennifer

    I am very new to this PKU stuff. My daughter is almost 3 months old and had PKU, a mild case but still requires diet. She is the first in both of mine and my husbands families. I was wondering if anyone knows of any software programs that you can download that helps you keep track of how much phe a person is getting. I actuall found one on my special but I couldnt get it to work. Please I can use all the advice I can get. nThank you

    Avatar of Tracie

    Hi Jenny,
    I was born with PKU,and now i am alot older.
    Its okay don’t panick.
    I was considered Borderline PKU. nVery mild case,but i still required a special diet.
    Its not that bad to control.
    All foods that u are not allowed to eat or will harm a PKU child/Adult will have a warning on that item.
    As for myself i count all my protein on each food i purchase.
    Ur child will be really healthy. nJust think of her being a vegitarian/Vegan. nDepending if when older allowed to have eggs.
    I go online and find out the lowest protein content and make a list of edible foods.
    I just keep a handbook,but after a while u wont need anything cause u are already going to know the contents.
    Bascilly as an infant they can get use to alot of veggies and fruit,and believe it or not nif only given certain foods she wont even want to try meat or hight-pro foods.
    I am 39 yrs,and i have never had milk,beans(of any kind),peas,etc.
    Ur child will only know what u feed her.
    I hope i was a little helpful?

    Avatar of Jennifer

    Thank you!! Do you have any web site that you like more than others or that have more information on them?

    Avatar of Breanna

    If you go to and click the dietwell link you can register for that. Basically dietwell is a program that helps you to keep track of daily phe intake, formula, and phe levels.
    One benefit to this program is that each day you enter information you recieve ‘credit’ that can later be used for a discount on Cambrooke’s low protein foods. I know with your daughter being only three months you won’t be buying food for awhile, but it is definitely a nice tool to have for later in life!
    Congrats on your daughter and I hope this information helped!

    Avatar of Eugene

    Funny! I am a software engineer with PKU. I was trying to gauge the interest in an application to work with both a PC and a portable device like a iPod or iTouch or black berry. Not much interest but I am working on one for myself. Checkout the Adults and PKU Forum section look for PKU Calculator Tracking Application and reply.

Viewing 5 posts - 1 through 5 (of 5 total)
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