Community Discussion Forum Parent support Dealing with PKU

Viewing 4 posts - 1 through 4 (of 4 total)
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  • #7224
    Avatar of Katie

    I’m a new mom in Alabama with an 11 month old daughter with PKU. I’d like to ask those of you who have PKU what it’s been like for you growing up with PKU. I’m worried about explaining this to my daughter and what it will be like for her growing up around people with regular diets. We are a bunch of meat eaters down here and I’m so anxious about how this will affect her. Do we need to change our diet too? We just want what is best for her. nKatie

    Avatar of Breanna

    I don’t think I’ve grown up any differently then any other kid because of my PKU. Just teach your daughter bites and pieces about PKU as she gets older. I don’t think my mom has ever actually sat me down and said ‘this is what PKU is, this is why you have it’ and on and on. When I was little she taught me to make my milk, then I learned what ‘no foods,’ ‘maybe foods,’ and ‘yes foods’ are. I don’t think I actually learned why I have PKU (all the genetics behind PKU) until I was about 12 and by then my mom knew more then enough about PKU to explain it. Even if she couldn’t answer a question we always had my doctor and dietitian to turn to. Just like I’m sure your taking baby steps to learn how to feed a PKU baby your daughter will learn all about her PKU in baby steps. I promise she won’t wake up one day and have one thousand scientific questions .
    To be honest what everybody else eats has never interested me. Until I was 9 my family were vegetarians. I don’t pay much attention to what my family members are eating now and I never did in the past either. As long as I have something tasty on my plate it doesn’t matter to me.
    My parents are due to have their 8th kid this summer, so I’ve got enough siblings to know that no two people are ever the same. My 9-year-old sister also has PKU and the two of us are complete opposites. My mom has a peanut allergy, my dad is allergic to mangos, three of my sisters are allergic to kiwi, I have 2 friends who have gluten allergies and one who is a vegetarian by choice. Like I said no two people are exactly the same and no two people eat exactly the same. PKU is just the one thing in life that makes me eat differently.
    Basically, whatever attitude you have towards PKU your daughter will have as well. If you treat it like some terrible disorder that has ruined the world, that is how she’ll grow up to see it. BUT if you teach her that there are many other worse disorders out there and PKU doesn’t make her any different then the next kid, chances are, that’s what she’ll believe.
    Breanna 16 CPKU

    Avatar of Katie

    Thank you Breanna. You made me feel alot better and gave me some things to think about. I am sure I’ll have more questions and concerns later. nKatie

    Avatar of Tracie

    HI there,
    I am an older Borderline PKU MOM. nMy daughter is awesome and PKU free.Yippee.
    As for myself growing up the Drs. played arounfd with my PHE intake. nFor example:they would have me try regular Milk.YUK nBeans ,peas everything i was not allowed to eat.
    I have a rare gene mutation that has thrown the DRs. off a bit. nSo they wanted to see how high my levels would actually go.( Highest has been around 13-15)
    I hated trying the REAL FOOD.
    Which brings me to my point,your little one will actually be use to it.Especially if they are already on formula,and getting use to some of our special foods.
    Honestly now i can’t eat meat without feeling sick to my stomache.(any type)
    I think as you grow with knowledge it will be easier.My family are meat eaters,but honestly ni never took to meat of any kind.
    If they don’t taste it they don’t know what they ar missing,and they probably wont like it anyways.LOL
    Like with Bre i read she ordered a salad and by mistake they put bacon in it,and it made her sick. nMeat for me lays like a brick,and is just not worth it.
    Good luck you will do great. nREMEMBER KNOWLEDGE IS POWER!
    Take care, nTracie-PKU

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