PKU.com Community Discussion Forum New to PKU.com Niece was just diagnosed at 4 days old

Viewing 7 posts - 1 through 7 (of 7 total)
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  • #5909
    Avatar of Zyznewsky
    Uncle Mzyz
    Member

    Hi guys,
    My niece was just diagnosed with PKU this morning. She is currently only 4 days.
    I’ve done some reading on PKU for the past few hours to understand the disease and how to treat it, but I was wondering if I could get someone’s actual experiences with PKU and what I should expect from my niece as she grows up.
    I guess my main question is this: As long as my niece follows the low phe diet, how different will her lifestyle be compared to those who don’t have the disease? Also, what are some of the major characteristics of a person with PKU (even if they are treated with the correct diet)?
    Thanks in advance.

    #5912
    Avatar of Breanna
    BreaMarie91
    Member

    I guess my main question is this: As long as my niece follows the low phe diet, how different will her lifestyle be compared to those who don’t have the disease? Also, what are some of the major characteristics of a person with PKU (even if they are treated with the correct diet)?
    Hi, nFirst let me tackle your first question of how different your nieces lifestyle will be if she follows the diet. The answer is, not very. I come from a family of seven kids, myself and my 8-year-old sister both have PKU. We eat alittle differently then our siblings, have to drink our special formula, check our blood once a month and go to our PKU clinic either every 6 months or once a year. Besides that we are just the same as our siblings. We both take dance classes, the two of us can basically get alone with anybody we meet, I’m getting good grades in school and I’m hoping to go to college someday. So I’m not much different then any other teen and neither will my sister.
    For your second question there really aren’t many major characteristics of a PKU person if the diet is followed. Although, it is common for PKU people to have blonde hair and blue eyes, or just a lighter complextion then their siblings. I don’t have blonde hair or blue eyes but I do have lighter hair (pretty close to blonde) and skin then my siblings. Besides that, there really are no other characteristics.
    I have to admit though, I am alot better in math then my older brother and older sister. Lol, maybe that’s because at a young age I started counting the phes in my foods and measuring my foods.
    I hope this helps! nBreanna 16 w/CPKU

    #5913
    Avatar of Zyznewsky
    Uncle Mzyz
    Member

    Thank you Breanna for the quick response and for the help!

    #5920
    Avatar of Sarah
    HappyMom
    Member

    Hi, nMy son Easton is 16 months old. He also has PKU. Easton has been on the PKU menu since he was a week old. You can’t tell any difference between him and other kids. He very outgoing and bright. Right now we’ve been experimenting with new foods. He seems to like the Chow Mein and Veggie Speghetti recipes. They are special low protein recipes but my husband and I eat them along with Easton. They taste really good.
    Sarah

    #6636
    Avatar of destiny
    destiny
    Member

    hey, she’l be fine, and i think its a good idea going on to sites like this to get advice. am no expert in pku, but so far my 4 yrold is healthy, so i must be doing something right. u have to be hard sometimes, no matter how bad u wnt to gv the child something they cant have, dont do it. most of the time, ill write down what he has in the day, so i dnt forget so i dont worry. it is worrying when they get ill, they dnt like to eat, thisl make them weak obviously. when my sons ill il try fill his exchanges up with hiugher amounts of protein in them, like yogurts n chocolate. my sons blood levels havnt yet been so high. but once when he was in hospital, he was put on steroids which made them high. he was hyper, dark around the eyes and just naughty. it depends how high the bloods get and for how long theyr high for that decides the effect on the child. at the moment though , my boys levels are abit low, and im worryd because theyv always been fine. its horrible waitng for the results of the bloods to come back sometimes. they shud make a blood sample kit, like diabetics have, so u can get a result there and then. good luck. just follow the diet and everytin will be fine xxx

    #6637
    Avatar of destiny
    destiny
    Member

    reece is only 4yrs old, and with pku. hes very well behaved in his playskool, caring, friendly, beyond his years. seems ahead of sum kids.

    #6639
    Avatar of Breanna
    BreaMarie91
    Member

    Destiny,
    I think they have been working on a blood test kit that is similar to a dietbetics blood meter. I think they’ve actually been working on it for a long while. The problem is it would most likely be very expensive, that and we have no idea if this would be avaible in 5 years, 10, 15 or what.
    I am sure that Reece’s levels will be fine. That usually happens when kids go through growth spurts, their levels go down. It’s because they’re growing so they usually need more phe. I guess a plus is that your doctor might just very well tell you he is allowed more phe. Who knows. But it will work out in the end! nBre 16 CPKU

Viewing 7 posts - 1 through 7 (of 7 total)
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