Viewing 15 posts - 1 through 15 (of 29 total)
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  • #4892
    Avatar of Kayla
    kkaylalynn
    Member

    Im a sophmore in high school and i am doing a report on PKU because my eleven year old sister has it and we are having problems with her staying on the diet and drinking her formula. I just wanted to know if anyone had any information about why back years ago the kids were taken off the diet at five and then found problems so decided to put them back on? I just wanted to know if anyone had anymore information on this topic. Thanks for there support and help. If anyone has any questions about PKU dont be afraid to ask me because I know quite alot. (This report has to be 12 pages) Thanks again… n [/COLOR][/SIZE][/FONT]Kayla~[FONT=Arial][SIZE=12][COLOR=blue]

    #4893
    Avatar of Breanna
    BreaMarie91
    Member

    Hi my name’s Breanna and I’m also a sophmore and me and my 8 year old sister have PKU like your sister. To answer your question they used to take kids off the diet when they were about 5 because they thought that since their brains had stopped all major developement that it couldn’t effect them but then they found that even though their brains weren’t growing anymore it still effected them which was why they put them back on diet. If you have any more questions or you or your sister want to chat or anything you can leave a message here or email me at completeangel@ameritech.net nBreanna

    #4894
    Avatar of Breanna
    BreaMarie91
    Member

    Oh and I also forgot to put, what other kind of info did you want? Maybe I could help.

    #4895
    Avatar of Kayla
    kkaylalynn
    Member

    hey! Thanks so much for replying! I have this huge report and my main purpose so doning PKU is to know exactly why ids were taken off then put back on but i just cant seem to find enough information about this topic. I will add what u sid into my report thanks! Oh and i would love to chat with your and your sister. I would like to find out more about you guys. I dont know if your sister has the trouble staying on the diet like mine. She seems not to want to do it anymore. same with drinking her milk/formula. Does your sister need to drink somthing. Well hope to talk to you later!

    #4896
    Avatar of Breanna
    BreaMarie91
    Member

    Yes both me and my sister have to drink a formula. My sister drinks something called Phenex 2 unflavored and I drink PKUexpress coolers which is formula that is like a juice that comes already made in something like at juice pouch and I also take Phenex chews which are like little tablets that you can take instead of formula. I actually have 5 sisters and a brother, Amber is 18, Aaron is 16, Cassandra is 12, Danielle is 9, and faith is 5 but they don’t have PKU. Erica is 8 and she has PKU like me and your sister. Erica loves her formula but I have always had huge problems with finding one I like.
    If you sister is having trouble with her formula maybe your mother could take to her PKU doctor or dietian about trying other formulas. There are alot of things out there besides just drinks, like I know they make phlexy 10 bars which look basically like candy bars, then there are the phenex chews which come in chocolate mint and lemon lime flavors and they are like little tablets that are the size of nickels. Plus alot more.

    #4908
    Avatar of Maddy
    GotPKU
    Member

    once the kids were taken off at five, they realized, as a teenager or older, they were having serious brain developmental problems, and realized, that although their brains had mostly compleated growing, that the condition could still effect it. the only way they could prevent mental disability’s was to keep the children on the diet.
    i HATE having PKU, but it’s part of my life and i dont know ani other lifestlye. When i was young i ALLWAYS threw fitts about it, but as i got older i just realized, their was nothing i could do. Going off the diet wasn’t going to improve anything. So here i am 14 and fed up with it. i have many concerns about my future with PKU, but i try to accept anything that comes my way. ALthough it’s INCREDIBLY hard, i try not to let it dominate me. i just want to continue as normal. -maddy

    #4916
    Avatar of Kayla
    kkaylalynn
    Member

    Thanks for replying! It has been very hard having my sister (Amber also) follow the diet. She sees all of us eating meat and she wants some! she doesnt have classic pku so we allow her to eat alot of dairy things. The formula is the worst though. She just doesnt like it and we had her try alot of different ones. How did you guys find a formula that you liked or do you take something else?

    #4917
    Avatar of Breanna
    BreaMarie91
    Member

    Well for me I’ve been struggling to find a formula I like since I was around 7 or 8 and it took along time and finally I settled on PKUcoolers which is like a juice and phenex chews which is like little tablets. I guess I just tried alot of different samples that my dietian gave me. I would find one I liked but after a month or two of really liking the formula it almost seemed like it wore off and I started to realize all the things I dind’t like about the formula. For example after awhile I started to realizes that the formula left an after taste, or was thick, you know things I hadn’t realized before.
    With me and my younger sister we have Classical PKU (the most strict case of PKU) So we really have to watch what we eat, we’re allowed 300phes. I was wondering if your sister has to count her food aswell? If she does how does she count it? Phes, exchanges, protien or something else? nBreanna

    #4919
    Avatar of Maddy
    GotPKU
    Member

    i also take the coolers for my formula, it’s really quick and easy, there’s no more mixing which is alot easier, but it does taste kinda nasty (although you do get used to it) and it leaves a really bad after taste so it’s better to drink them before you eat so you don’t have to deal with the after flavor. Wow thats really lucky that she can have dairy!!!! iv’e never had too much dairy before, so once my mum found a tube of yougart for only 2grams of protein. and i decided i wanted to use my exchanges like that. but since iv’e never really had too much dairy at one time, half way through the tube (not much) i started feeling really sick, b/c my body has become almost intolerable to it. i havn’t ever been tempted to eat meat, b/c not eating it and tasting the ‘delightful’ taste (or so iv’e been told) it just looks really nasty to me, so i really dont know much about that. i used to sneek alot of foods when i was younger, but iv’e growen out of that. does your sister ever sneek any foods?

    #4920
    Avatar of Breanna
    BreaMarie91
    Member

    I dunno, the coolers aren’t to bad for me, although like you said I do have to either eat or brush my teeth after I drink them or it will leave an after taste. As for the meat thing I agree with you, meat never looked to tasty to me. Even if I was allowed to eat meat I don’t really think I would have it.
    Kayla, I was just wondering if your sister sneaks foods, if so what types of foods. I think that’s just an age thing though because when I was around 9 to maybe 13 I snuck food alot but then I kind of grew out of it.
    You seem like a great sister and you really want to help your little sister. I remember when I was around your sisters age and my sister (Amber is 3 years older then me) used to drive me nuts. She’d always follow me around telling me things like “Don’t eat that breanna,” Or “Breanna why don’t you have this instead” And what I hated her saying the most was, “Breanna drink your milk.” I now know she meant well but at the time it felt like she was trying to pick on me or bossing me around and I always felt like my PKU wasn’t any of her business. I don’t know if your sister is alittle like that where she doesn’t really want you involved with her PKU and telling her what to eat and what not to eat, but if she does she’ll probably grow out of it. nBreanna

    #4921
    Avatar of Kayla
    kkaylalynn
    Member

    Wow now i feel bad. I am the type to really get on her about drinking her milk and your not suppose to eat that. I do boss her around in a way, but its for her own good. I just want her to be healthy. Anyways my sister doesnt have classic PKU. She is able to eat alot more of a variety. Honestly she eats really about everything other than meat. She eats all dairy and chips. She doesnt need to count either. We use to when we first learned that she had it but we stopped years ago. The only thing she needs to do is drink her formula and her levels are in the six range. I guess she is lucky compared to alot of PKU children. When met many kids with this disease before and alot of them count. We have told her shes lucky and all she needs to do is drink the formula. But she seems to have a hard time doing it. She just doesnt like it that much!

    #4922
    Avatar of Breanna
    BreaMarie91
    Member

    Don’t feel bad, because your sister will realize someday just like I did that you were just looking out for her. My sister did get on my nerves alittle when I was younger but that was because I didn’t realize how important the diet was and thought my sister was totally overreacting about the diet. But I realize now she wasn’t overreacting at all. Does your sister have hyperphe? I was just wondering because I know that is a more mild type of PKU. For me and my sister we can’t have meat at all, or any dairy but we can have little grains like ceareal.

    #4923
    Avatar of Breanna
    BreaMarie91
    Member

    I didn’t mean to say that like that to make you feel bad, I was just saying that your sister might not understand now but eventaully she’ll realize your just caring about her.

    #4924
    Avatar of Kayla
    kkaylalynn
    Member

    Its ok i know! she will thank me in the end. Im not sure if she has hyperphe. What exactly is that. I heard of it but i dont really know what it is. She has a mild form of PKU. When she was diagnosed with it her levels were just over 20g and thats really high of course b/e regular levels are 1 or 2g. But she wasnt sky high like classic. So im really not sure about hyperphe. If you tell me what it is then I might know. She is able to tolerate all dairy just about and grains just not any meat, but she does eat bacon. She does have a very mild form though because just drinking her formula she can keep her levels at six. I really believe that the diet they are on is to help them with IQ scores and behavior because in all the research i have done scientist say that the formula is the mian thing that keeps the levels down. But I guess I could be wrong. lol!! I am learning. I am hoping I can get an interview with Amber’s nutritionist so that I can understand all this better. (The more in depth stuff) Do you believe I am right or do you think its something else that the diets for?

    #4925
    Avatar of Maddy
    GotPKU
    Member

    BACON!!!! WOW!!! thats heca tight!!!!!!!!!! wow i can’t believe she can eat bacon!!! thats really cool!!!! My levels have only ever been at the perfect level like once in the last 5 years, and everything i eat, i have to count, iv’e never even tried a little bit of meat! im aloud 14 bakebeans for 1/2 of my daily allowance!!! i am stunned!! iv’e never herd of such a mild case! how many forrmula mixes does she have to have a day? Wow im still stunned about the bacon! i guess i have alot more to learn about PKU than i thought!

Viewing 15 posts - 1 through 15 (of 29 total)
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