PKU.com Community Discussion Forum That’s PKU life! Friend with PKU

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #5178
    Avatar of Kevin
    Kevin612
    Member

    My friend has PKU and drinks the formula but doesn’t really stick to the diet, especially when she is over at my house. I was wondering how serious of a problem that is. I have done some research but most of what I have found is just for kids that werent diagnosed soon enough. Are there any serious health problems that can result from it if you dont stick to the diet later on? She is 16 and has been sort of off it for a few years now.

    #5180
    Avatar of Breanna
    BreaMarie91
    Member

    Hi, I think that’s great that your interested in helping your friend. My name’s Breanna, I’m 15 and like your friend I have PKU. As of right now it may not be a problem for your friend but it will get to be, after awhile your friend could experience things like headaches, vomitting, tremors or shakes, loss of balance, more irritable, harder to concentrate, lower IQ, harder to follow simple instructions and over all poor health. nAlso if your friend has a child in the future and isn’t doing good with her diet and gets pregnant it can cause issues. If a woman has a baby while either off diet or having poor blood levels (not sure how much you know about your friends pku) it can result in a miscarriage, or the baby could be premature, be mildly to severly retarded and could have heart problems. So yes your friend being off of the diet or doing poorly with the diet can effect her. If you really are interested in helping her it might be a wise idea to talk to her parents or siblings if she has any. Basically someone with PKU eatting poorly can be just as intoxicating as getting extremely drunk. nBreanna
    Oh if you have any other questions I’ll be happy to answer them.

    #5421
    Avatar of Mary Caite
    Mary Caite
    Participant

    hi this is mary caite…im 14 years old. just was gonna tell u that i was the same way. over my friends house and during lunch at school i was never REALLY on the diet but i drank my formula. well while i was doing it it didnt really seem like a problem for me. but my family was seeing changes in my attitude. i would be tired all the time and cranky. id have mood swings and things like that. now that im following the diet better i realize how different i act. i have so much more energy and im not cranky or have mood swings. you should talk to your friend and tell her she would feel a lot better when she is on the diet.

    #5422
    Avatar of Breanna
    BreaMarie91
    Member

    Mary Caite-
    I know what you mean, thru middle school my levels weren’t too great and I was ALWAYS tired. I would be lucky if I could make it home without feeling like I was going to crash and fall asleep. Plus I always fought with my sisters and I had absolutely no motivation when it came to school work.
    But now that my levels are alot better I have so much more energy, I hardly fight with my sisters anymore (well no more then most sisters do ) and I’m doing 10 times better in both school and dance classes. So if anyone who is either off diet or not doing good and is reading this I would suggest you try to get back on. I know this probably sounds over said and all but, YOU WILL FEEL BETTER! Take it from someone who knows, I wasn’t even fully off my diet and my levels were just alittle high and I noticed a huge change in myself. So if your off diet and go back on I’m sure you’ll noticed a change 100 times bigger then what I noticed. nBreanna

    #5440
    Avatar of
    Anonymous

    HELLO IAM BETHANN AND I TAKE CAPLES IT GRATE 60 CAPLES A DAY NO BODY KNOWS IAM TAKEN THEM NOW WHERE YOU LIVE THEY MAY NOT HAVE IT nTRY TO FIND OUT IF YOU CAN GET IT WHERE YOU ARE AT ASK YOUR DR.I KNOW IAM OLDRE THEN ALL OF YOU I JUST GOT THIS TO SAY IT GET BETTER WITH TIME I USED TO DRINK LOW PHENLACK IT WAS BAD TASETING AND I WAS OFF DIET FOR 23 YEAR NOT GOOD FOR nHEATH SO I TELL YOU THIS IT IS A DIET FOR LIFE STAY ON IT YOU’LL LIVE A HEATHLY LIFE AND IF ARE NOT ON DIET IT WILL GET WOEST AND PROBLE BE IN A GUSS HOME AND YOU ALL DON’T WANT THAT
    I KNOW I DON’T SEE YA BAMO.

    #5443
    Avatar of Breanna
    BreaMarie91
    Member

    Well actually I was never even close to being off diet…but my levels were usually between 6-8 for the most part. So just the change from 6-8mg/dl to 2-6mg/dl like they should be has changed me alot.

Viewing 6 posts - 1 through 6 (of 6 total)
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