PKU.com Community Discussion Forum Parent support Brothers and Sisters without PKU

Viewing 9 posts - 1 through 9 (of 9 total)
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  • #4546
    Avatar of Julie
    juliaccheek
    Member

    I am worried about changing the family diet to exclude the foods my son will not be able to have. I know I have a while before this is an issue, but I’m wondering if I shouldn’t start now to give my daughter time to adjust. My husband and I joke all the time about how much she loves meat. I’m just concerned about how to avoid making either of my children feel deprived at meal time. Any advice from those who have been through this would be greatly appreciated.

    #4550
    Avatar of Breanna
    BreaMarie91
    Member

    I’m not an adult, but I will tell you this. If you want to exclude meat to help your PKU child then it maybe a good idea to start that now, although if you decide not to do that I can reassure you your PKU child will adjust. It’s like my mom alwasy says, she’s never eatten snail and doesn’t miss it, I’ve never had meat and even though my siblings do eat meat I’ve never missed it. In my opinion it maybe easier for you PKU child if you don’t exclude meat from you family because when they eventually start school others will be eatting that. That is just my opinion and if that is what you feel is the right thing to do, then do it because your the mother and only you know what is right for your child. nBreanna nHope that helped.

    #4658
    Avatar of BELLA-MARIE
    belzie
    Member

    Hi, my name is Bella I’m 22 and have PKU, and have just graduated as a paediatric nurse. I don’t think you have to be worried. I also don’t think to have to change the familys eating habits. I don’t have any siblings but I know my mum and dad didn’t stop eating meat etc when I was born. I just grew up educated that my mum and dad ate meat but if I ate it I would be poorly. I didn’t feel left out at all and your other children then don’t suffer. I’m not sure where you are from but a traditional meal in England where I’m from is a roast dinner, consisting of roast meat, potatoes and lots of vegetables. I would just have exactly what my mum and dad had but no meat. It was fine. Don’t worry as long as your child is made aware then they should pick up that it is not good for them. Try to find alternatives for example you can get PKU sausages and burgers for when your other children have meat. Youve got a while to plan so just don’t panic and I’m sure your dieticians will give you advice. Also I think in my opinion it may not be completely healthy to stop your other children from eating meat etc as they would not be taking supplements to replace the vitamins etc from the meat, like your child with PKU and so would maybe become deficient. There is no reason really why you need to deprive yourselves and children of meat etc if you like it. There are lots of alternatives and recipes out now for PKU, many more than when I was a baby. Your baby shud never feel left out. You can make PKU cakes, get PKU chocolate. He’ll be fine. nBella x

    #4662
    Avatar of Breanna
    BreaMarie91
    Member

    Hi again, I agree with Bella, there are alot of foods out there for people with PKU. For example: low protein pastas, pasteries, treats and other things. Plus their are alot of recipes for low phe ice cream, bread, cake, brownies, torillas ect. Plus there is also fruits, veggies, and low phe snacks like fruit snacks, fruit cups, some little debbie snacks (the little debbie snacks really depends on how many phes your son is allowed). But if you still decide stop eatting meat then I would say talk to your family doctor on the best ways to help your other children, Good luck! nBreanna

    #4763

    yes i agree with the both of you

    #4770
    Avatar of Breanna
    BreaMarie91
    Member

    Also if your wondering on how to make your daughter understand what PKU is all about I wouldn’t worry to much. I talked to my older sister who is now 18 and she said she never really remember my mom ever explaining to much of PKU. My sister was basically learning about PKU at the same pace as my mom (and she was 3). My mom just did little things like let me sister help make my formula before I could make it myself, let her measure my food and if my sister asked why I ate different she wouldn’t give a huge explaination but a simple one that a little kid can understand. And suprisingly my sister to this day probably knows more about PKU then me! nBreanna

    #5566
    Avatar of Keisha
    kmariewood
    Member

    Hi Juliaccheek
    my name is Keisha i totally agree with everyone else, when my first child was born with pku my husband and i considered changing our diet but, we love meat to much so need i say we still eat meat. meat has never seemed to bother Zach (6years), although sometimes he likes to pick it up and smell it curious more than anything, anyways we now have 2 other children (4&2) who dont have pku, but hate meat they want to eat what their big brother is eating.
    keisha

    #5570
    Avatar of Breanna
    BreaMarie91
    Member

    Keisha-
    I think that is absolutely adorable that your younger kids want to eat like their big brother! My sister (Danielle is 10) loves to try all the new foods and formulas I get. She doesn’t really like the taste of the formulas but still likes to see what her sister is drinking.
    Then my cousins (Tyler is 7) has always wanted to eat just like me and my little sister since he was little. Anytime I’m at his house or if we’re both at my Grandma’s he always insists on having my low protein noodles with tomato soup aswell. So he sometimes eats my low protein food with me becuase it seems like the tables flipped in his case, it’s not me and my sister wanting to eat like him but he wants to eat like us!! It’s so cute, we don’t really ever worry about him eatting our low protein foods once in awhile because Wisconsin provides it for us so cost isn’t an issue.
    As for the meat, Ack! Never liked it (no offense ) Me and my mom went out to eat about 2 months ago and I ordered a salad and forgot to ask for no bacon. So it came out with bacon on it and I just decided to pick it off, well I missed a piece. If you all could have seen my face when I realized I’d eatten it, it was precious! Let me just say I don’t think I’ll ever eat that again. My parents were semi-vegetarians when I was younger until around when my little sister was born. I personally don’t think it really effected me much different from PKU teens I know who had parents who were full vegetarians or big meat eatters. nTruth is, when your children go to school or grow up and start working, they will be around others who eat meat and there isn’t much you can do about it. So in my opinion it would be best to get them used to being around things they can’t eat so they know that it is okay to be alittle different. But I don’t know that’s just my thinking. nBreanna

    #5574
    Avatar of Keisha
    kmariewood
    Member

    Hi Breanna
    I think its great when the other kids want to eat or atleast try Zach’s food, even though we have to pay alot of money for it because it seems to encourage Zach to eat it which is great. My other children wont try his maximaide but they think it stinks. we also all have 2 to 3 vegetarian nights a week which helps. because we are all eating the same as Zach
    keisha

Viewing 9 posts - 1 through 9 (of 9 total)
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