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

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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.

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