Community Discussion Forum New to Dealing with it

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  • #5973

    To all parents of children with PKU, how have you dealt with this all of this time. And what tips can you give me to learn to cope and deal when my baby starts eating solid foods. I feel so bad because I feel its my fault she has this condition and may feel like shes different from everyone else because she cant have certain things. How do I approach this?

    Avatar of Keisha

    I think it is very normal to feel as though it is your fault that your son has pku at the moment. There is not much I can say to you to make it any easier except for try to take it one day at a time, pku will eventually just become an everyday part of life. With the proper treatment and care your son will grow into a healthy young man who is able to take care of himself and function as a valuble member of society. My son has just turned 7years old and he has classical pku, he is a happy, healthy and I would say normal but what is normal? seven year old. Some days his diet is very easy to stick to, but then other days Im still reduced tears asking myself why I gave this to him. The next day things always look better. nKeisha


    Thank you for the advice. I agree with you entirely. Im sorry, I have a bouncy baby girl, but advice still the same for both genders they will all be fine if taken with the necesarry precautions, but you just dont want them to feel any different.

    Avatar of Keisha

    sorry about that I see you have written she in your first post (my bad). nZach has days where he will just hate having pku and being different from everyone else,we also have two other children who are younger than zach who don’t have pku and some days i just wish one of them did because I think it would be easier for zach to deal with. somedays zach will stomp his feet and sream and scream and scream so loud that it feels like your heart is about to break in two and all I can do is hold him reassure him that it is ok to be different. somedays he will say things like I cant wait until Im an adult then Im going to eat what ever I want to and you wont be able to stop me.
    then there are the days when I go to watch him play football and he scores a goal, or when i watch him race around on a motorbike track or when he brings home a report card with A’s and B’s on it and, he gets so excited, these are the best days because I know that 60 odd years ago none of this would have been possible for him, and I thank God for all the people who helped give me my normal little boy.
    try not to make life all about food neat to live dont live to eat

    Avatar of Breanna

    Hi, nLike Keisha already knows I’m not a parent, but I do have PKU. Like Keisha said, try to take it one day at a time and just know that this was not and will not ever be your fault! I know that when I was younger my mom probably felt that way, but I have never once blamed her for my PKU because I know it was never her fault. I know there are so many other things that I could have been born with that could have prevented me from growing up like all my other siblings.
    I won’t lie, there have been a few times when I would get upset and tell my parents that I don’t like being different. Then again, every child is going to feel like they’re different at one point or another in their life weither or not they have PKU.
    PKU has actually brought so many more wonderful things into my life aswell (I know you might think I’m crazy for saying PKU is a good thing). I have met so many more people and gone to so many more places then my other siblings because of PKU related events. I probably eat alot healthier then my non PKU siblings. I think PKU has made me more compassionate and understanding towards other PKU and also if it weren’t for me having PKU I would have never had the dream to go to college and become a medical geneticist and to work in genetics.
    Your baby girl will grow up to be a wonderful person if she follows her diet. I think the best thing any parent can do is just to support their child. Out of my family of seven children me and my 8-year-old sister both have PKU and my mother has been nothing but support. And just don’t make food a big deal. When I was younger and all my siblings went to spend the night at my cousins house my parents never told me I couldn’t and they never made a big deal out of my food. They just sent along what they needed to without making a fuss. In my eyes food is food, I’ve gotten past the age where I cared that I was eatting differently and as of right now I could care less if I were the most different person ever. nSorry for posting so much but I do hope this helps you. Just know that your daughter will be fine and that anytime you need to talk to me or anybody else we’re right here. nBreanna n16 w/CPKU

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