Community Discussion Forum New to Kids with PKU

Viewing 5 posts - 1 through 5 (of 5 total)
  • Author
  • #8069
    Avatar of Kelly

    Hi there I have a son who was born in Dec of 08 with PKU. He is the only one in our family who has PKU ever so this is totaly new to my husband and I. We are doing very well with the unexpected changes and are so excited to see him grow. My question is for all you kids, now adults when you found out you had PKU how did you feel?? Did you feel “different” when you went to school or met new people who didn’t understand? I just want to understand how other people who have PKU understood and dealt with it as they learned to understand what it really meant and how it impacted your life?! Any comments or stories would be greatly appreciated, i just want to be able to understand it for someone who has PKU and has gone through the life of it and how you feel. Thank you!!! Kelly[/FONT][/SIZE][/COLOR]

    Avatar of Breanna

    When I was growing up PKU was never an issue for me because my parents just treated it as if it was a part of my life. Which it is. I do have two sisters who have PKU, but they are younger then I am and when I was learning what PKU is they were not born. My parents always taught me that everyone is different in one way or another, whether it is because of a medical reason or otherwise and that is what I always believed.

    Avatar of Nina

    hi Kelly my name is Nina and I`m 23 years old. I have a classical PKU and I`m the only one in my family who has PKU. Living with PKU can be very difficult or very easy but it actually depends on 2 things: 1st thing is the parents, and the 2nd the enviroment- meaning people around your son. When I was little my mom went to very hard times dealing with my diet because over 20 years ago there wasn`t so many products for people with PKU, for example my mom use to bake my bread, and there was no cakes or cookies for kids with PKU. Thanks God, everything changed over those 20 years and now everything is so much easier – I know that now you are thinking that it`s easy for me to say that because I`ve been there already, but you`ll see that it only looks that scary at the begining. When I was little people didn`t know too much about PKU, now it`s not much different but those days people are more understandable. You will just have to explain your son that just because he has diet, he isn`t different from all his friends at school, try to do everything to make your son feel that his diet isn`t a problem. when he will go to school, invite his friends and make something delicious for all of them -including your son so they can see that his diet isn`t scary. In my own experience, I can tell you that some of kids with PKU don`t want to tell everybody about their diet – I never liked, still doesn`t like, when my family explain my diet to their friends for no reason – I mean people who they are seeing once in a blue moon, I use to say that it`s some kind of allergy for protein instead explain all the reasons for PKU and telling people that if I won`t follow my diet my brain will be affected – people are not use to hear something like that. Be patient with your son and try to show him that the diet can be fun. when he gets older don`t be afraid to take him eat out – of course first ask your dietition what he can eat -if you won`t introduce him to eating out he won`t do it because he will be to afraid and because of it he might stay away from his friend. you don`t want your son to feel different then other kids. I can tell you now that by the time he`ll become a teenager you have to be really careful because usually around that time kids with PKU are trying to eat “like everybody” – meaning try to eat real chocolate or meat – they are just curious how that taste. From the very begining explain to him hoe important is his formula and teach him to be responsible about his diet as soon as you can because he has to get all the info from you so he can be successful in his life and you can be proud of him. I hope I didn`t scare you too much. if you have any questions ask me I`ll be glad to help. tahe care and let me know how is your son and how are you dealing with PKU so far.

    Avatar of Rebecca

    Hiya!! I’m nineteen and have classical PKU! I am actually off diet at the moment but I can tell you how it was when I was on diet & growing up!
    I went to school and my Mum told the school about my diet! This meant that when all my other friends had milk & cookies, I had aspartame free squash and the low protiene biscuits that we got from the doctors so that I didn’t feel left out!!
    As I grew up my friends had packed lunch with me so that there was nothing in the school dinner that might be wrong!
    The only time I really remember being a bit horrible was, as I got a little older and went to McDonalds parties and stuff. It was quite hard because nobody understood why I couldn’t have chicken nuggets or burgers etc, most of the time the parents asked me if I was vegan, I told them yes just because it was easier than explaining the whole illness to them at what was meant to be a fun day! I think that was the hardest part of growing up with PKU!!
    Perhaps to avoid that on days of your childs parties etc, maybe you could just have a chat with the parents who are holding the party BEFORE hand and explain it to them just to save any embarrassment or difficulty on the actual day.
    I mean, parties are only going to be a small part of your childs huge life and its just that, that one is the memory that sticks out most to me as a bad point in my PKU life.
    Other than that, my friends and family generally involved me in all meal times, even if what i was eating WAS different!
    I also remember feeling like the only one in the whole world, but my family made me feel special, rather than different!
    If you just keep your child involved with meal times, I’m sure they will grow up to be healthy happy and clever!
    I hope I have helped and not made you think EEK!!
    If you have any more questions that you think I could help with, please don’t hesitate to send me a message!!

    Avatar of Jennifer

    Hey! I'm 20 and I have classical PKU also. I'll be honest with you, it sucked when I was younger. I always knew I was different from all the kids in elementary school. I brought my own lunch with weird food and carried around my stinky cat milk is what my friends used to call it. At sleepovers I had to have different food than everyone else. You just want to fit in when your young. With all the new products out there though, it is becoming easier! As I got older though I really embraced my PKU. I now think it's a good thing to stand out from everyone else, and PKU sure helps with that. I explain the basics of it to people every chance I get! PKU is what has inspired me to become a doctor myself. I'm well on my way! :-) Let me know if you have any questions or need someone to talk to.

Viewing 5 posts - 1 through 5 (of 5 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional