PKU.com Community Discussion Forum Parent support from indiana need some help please

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #4674

    I have a 5 month old son that i take to riley hospital. my dietition helps me alot but i just think i need some more advise. if you have any info on pku or just some suggestions please…. please email me at avonheather@verizon.net.
    thanks
    heather

    #4681
    Avatar of Sarah
    HappyMom
    Member

    Hi, nMy son is 9 months old and has PKU. I’m not sure what kind of advice your looking for but I guess I would say, start expanding your food choices. Let me explain what I mean by that. My husband and I come from families where meals were from a “meat and potatoes” kind of menu. To hear my son would be harmed by eating meat was a shock at first. But since than I have gotten a PKU cookbook and read a recipe once in a while. Also when I’m at the grocery store I make sure to notice all the variety of fruits and veggies. This is how I discovered on my own that when Easton is old enough he can have rice milk (rather than dairy milk). There is a huge variety of foods out there and I’m trying to make myself more familiar with them so that as Easton gets bigger, having a specialized diet doesn’t seem so overwhelming to him or me.
    Sarah

    #4734

    thanks !!!! heather

    #6141
    Avatar of Kim
    tkjhorst
    Member

    Hi, I realize you wrote this last year but this is the first time I’ve been on this site and thought I would respond. I also live in Indiana and I have a 7 year old with pku. I remember feeling a little bit overwhelmed with everything the first year of his life. I don’t know what specifically you need help with but we dicided in the beginning that we would be very anal about how we weigh and keep track of his food. We did this so that he would learn how to do his diet correctly, you have to be careful and not ‘cheat’ on the diet. When he is old enought to make his own decisions with his food he’ll be ready to do that. So far he has done great, the kid has more will power than anyone I know. We also did not let him try anything that was higher in phe, even on special occasions. We keep certain medium phe foods for special occasions like birthday parties, holidays, etc. We live in Evansville if you’re ever coming through! Kim

    #6241
    Avatar of Corinne
    uswcec48
    Member

    Hi! I know some of the blogs are a little old, but I am new to this site. I’m a single mom with a two month old daughter who has PKU. I am very excited to find a way to network with other moms dealing with the same issues. I think my biggest frustration is trying to explain PKU to other people, who all want to act as though PKU is not a big deal. Like its a food allergy or something. I’m like, “Hello! Not even close!” Then, of course, you get the looks of shock and concern after you spend the next hour explaining what PKU really is and how its managed. Sometimes people laugh at the fact that I’m going to have to spend a lot of time cooking (since I’ve always been a cook-out-of-a-box kinda gal). I have to say, I’m really not upset about having to alter my lifestyle around the PKU diet (as I’ve noticed many people on other websites seem to be). I’m actually looking forward to eating quite a bit healthier. I just worry about my daughter feeling different as she grows up. I worry that she’ll feel deprived of things that other kids can have. I worry that her father won’t take the diet seriously. And I worry that other people won’t either. I never thought I would end up being an overly protective mom, but who knew…

    #6242
    Avatar of Breanna
    BreaMarie91
    Member

    uswcec48,
    I’m not a parent but, I thought I would give my two bits worth. Every kid, PKU or not, is going to feel different from kids at one point or another. Think back to when you were a kid. Was there a time when you couldn’t go to a party and felt different, or you couldn’t ride a bike so you felt different etc? It happens, sometimes kids feel alittle left out but they get over it because it’s a part of life. The best you can do is support her and make sure she knows there is absolutely nothing wrong with being a tiny bit different.
    Alot of kids today have food allergies and even though PKU is far from that you can still point out to your daughter that some kids eat alittle bit differently to. Everyone has their own little health problems they deal with and PKU will just be what your daughter deals with.
    As for everybody asking questions, I wish I could say it will stop but it never seems to end. Even now that I’m in highschool questions are still asked. The difference is now I’m the one answering the questions, not my mom, and it’s mainly friends asking. I don’t mind answering the questions because I know in most cases they’re just interested. I try to make the explaination as quick and simple as I can but so that they still get enough info. If they want to know more I just tell them to ask.
    Just help your daughter learn about her diet and follow it. Along the line you probably will meet a few people who don’t take it as seriously as they should, but you can’t change them. All you can do is continue to be there for your daughter. Eventually she’ll get older and she will beable to control her diet on her own without relying on adults around her. My 8-year-old sister who has PKU is getting close to the point where she can handle the diet on her own.
    Just keep your head up and remember there are alot of good things that come from PKU (Your probably saying: what?! Is she crazy?! lol ). But I defintally eat healthier then most people. I’ve met so many people, learned so many things and gone so many places that I would have never without having PKU. And there are other positive things. nSorry for writting so much, nBreanna 16 Classical PKU

    #6243
    Avatar of Breanna
    BreaMarie91
    Member

    And remember, whatever additude you have towards PKU your children will most likely have when they grow up. So if you complain all the time that it’s hard etc, then chances are your PKU kid might not be to positive towards their PKU. If you treat it like it’s just an everyday thing (which it is) then your child will grow up without thinking twice about it.
    So keep a positive additude!!

    #6245
    Avatar of Sarah
    HappyMom
    Member

    Hi,
    I wanted comment on the effects of the PKU diet on our family. Even though my son is just getting old enough to eat more solid foods my husband and I have been trying PKU recipes for months. We have favorites already and the diet have benefited our health. My husband has even lost some inches on his waist.
    Sarah

Viewing 8 posts - 1 through 8 (of 8 total)
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