Community Discussion Forum Parent support Dealing with PKU Reply To: Dealing with PKU

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

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