Community Discussion Forum New to anyone who can help

Viewing 3 posts - 1 through 3 (of 3 total)
  • Author
  • #6923
    Avatar of Amy

    Hi my son has pku he is one was orn in aug 2006 i would like someone who has had it all there life to tell me alittle more about what he will be going though will it be hard or is it easy just need some help on what to expect

    Avatar of Breanna

    I personally think how your child will live with their PKU depends on you as the parent. If you make sure that your son grows up knowing that his PKU doesn’t make him any different and he can do everything that everybody else can then he will grow up knowing that.
    That’s how my family was growing up. I was never told I couldn’t spend the night with cousins or friends, take dance classes and other things like that because of my PKU. My parents made sure they had food for me when everybody else had food and I was completely happy with that.
    Yes, as a child I ate foods I should every once in awhile but realistically think that’s to be expected. When you tell a child to do their homework or that they can’t watch tv, are they always going to listen? Of course not. When that happens the best you can do is just adjust your meals for the rest of the day the best you can and move forwards.
    Sorry I’m not super helpful. I guess it’s just hard to tell you what it was like growing up with PKU because it is such a general question. Let me know if you want to know more that I or anybody else here hasn’t said. nBreanna 16 CPKU

    Avatar of Tracie

    Hi there,
    I am 39 yrs old and grew up with PKU. nHonestly Brea is correct. nKnowledge is Power. nHe will be fine.He can do anything any other child can do. nJust keep him on diet! nMy parents took me off at 11 yrs old apparently when Drs. thought it was okay,but needless to say NO!
    I have been in Sports Management my whole life until i married and my husband in a PC Geek.LOL nBut that is why i don’t have to work anymore.
    I have a healthy 10 yr old n(going on 30 yrs ).LOL
    Overall he’ll be fine. nJust don’t make PKU a big deal.
    It’s just different foods ,and no protien.
    Don’t worry You can do it!
    Take care, nTracie-PKU

Viewing 3 posts - 1 through 3 (of 3 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