Community Discussion Forum New to Kids with PKU Reply To: Kids with PKU

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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!!

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