Viewing 10 posts - 1 through 10 (of 10 total)
  • Author
    Posts
  • #5182
    Avatar of angiebaby
    angiebaby
    Member

    why is it some with pku can work and others can,t i have c pku . pku is something that can be deadly . pku can cause problems in school like me i can,t hold a job cause of pku .cause it caused thinking problems. some are ina specail classes. i was i had people laugh at me i,m 31 people back then made fun of people like us . slow learning can cause by pku

    #5214
    Avatar of Danielle
    danirp24
    Member

    hi i am 23 and i have pku though i am not sure which kind. i was wondering have u been on diet ur whole life from birth? i didnt know that people with pku could be slow. i am just like any other person looking at me u would never know i was different. i have a job and i am finishing up college. i dont know much about pku other then the basics. i would love to learn more about maternal pku since i really havent heard much about it. i am here if u ever want to chat.

    #5217
    Avatar of Breanna
    BreaMarie91
    Member

    Angie, most of the reason why some people have a harder time living a normal life with PKU then others is how their diet was dealt with as a child. If you were taken off diet or on a very relaxed diet as a child the high levels of phenylalanine in your body can basically build up in your blood stream blocking the blood flow and oxygen flow to you brain. And that’s what causes things like lower IQ, learning problems, and can possibly leave children mentally retarded if PKU isn’t caught early enough. And then I was also told if you go off diet later in life you could experience things like tremors/shakes, headaches, vomitting, poor concentration, irritability, possibly seizures and alot of other things.

    #5271
    Avatar of Stephanie
    smorff
    Member

    Hello Breemarie
    Your so young both of you are but I am glad that your doing well. I am a 35 year woman with classical PKU and I have a daughter who is 14.She is PKU free.. nBut the reason why I am writting is because I wish that I was so hopeful like you when I was your age. But it made me feel good whe I read your profile I hope for the best for you and your sister.
    I have a sister and she is free from PKU and she always made fun of me as did other kids while I was growing up. I still have adults do the same to me now even thogh I am 35.So as you get older I hope you go far and more people understand about PKU
    nSmorff

    #5278
    Avatar of Breanna
    BreaMarie91
    Member

    Thanks, I always think that’s so horrible when people do stuff like that. People making fun of me used to happen alot when I was younger which is probably why I used to have a horrible outlook on PKU. But recently I got a new dietian (who is amazing might I add!) and my friends have become more understanding and just alot has happened in my life to help me turn my outlook on PKU around and all. I think the biggest thing was when I first saw my second cousins daughter for the first time (my dad’s cousin’s daughter is almost 2). She has a genetic disorder that has left her basically deaf and she is a sweet girl and all but has alot of learning issues. I just thought to myself, PKU can easily be handled by a diet, I can decide if I want good health or not but this little girl can’t. There isn’t any cure for her, not a diet, not anything. She has to live like this and there isn’t anything her parents can really do.
    I guess that’s kind of why I’ve become alittle happier about PKU. nBreanna

    #5539
    Avatar of Nick
    arkham
    Member

    The fact is, no 2 PKUers are alike. How each responds and is able to function is dependent upon multiple factors, mostly the specific mutations they carry and their dietary regimen, both as children and as adults. However, even knowing those things doesn’t guarantee a specific outcome. I know my mutations, one mild and one standard (if I remember correctly), and I was off-diet from age 3 to age 32. By that information, one would assume that I’d likely have problems due to high phe levels. However, for whatever reason, I’ve been able to function completely normally off-diet, including holding down jobs (more than one sometimes) and working my way through grad school.

    #5595

    I have wondered about this myself. The more I read and understand PKU – the more I see that no two people with PKU are the same just as it was mentioned in this post.
    I do sit back and feel blessed for the gifts I have been given that allow me to do the things I do. I was taken off the diet by age 6 and placed back on the diet when I was 23.
    I will say – while I was able to “function” off-diet, I can look back and see things in my life that I would never do, say, or feel if I were on-diet at the time.
    This my first post! I’m so glad to finally find a forum for adults with PKU that is active! Please feel free to contact me! I’m looking for some friends with PKU to share my diet with. It is very difficult for me at times.
    David Harris nAdult Living w/ Classical PKU nLast Blood Level : 7.6

    #5645
    Avatar of Wendell
    wlehman
    Member

    I’m not a PKU patient, but a pharmacist. A nurse asked me if I knew what formula(s) are suitable for an infant with PKU. Unsure of the answer, I was lead to this site…hopefully, someone hear might be able to help me. PLease!

    #5646
    Avatar of Keisha
    kmariewood
    Member

    Hi Wlehman nMy name is Keisha i have a 6 year old son with classical pku and we live in Australia. Im not sure where you are from but up until my son was 12 months old he was on a formula called xp analog then when he was 12 months old he went on to a formula called xp maximaide which he will stay on until he is 8 we also have a formula called pku cooler 10 which is also available for the littles the formula’s may be different where you are It is great that people who are not personally conected to pku are interested. i hope this has been of some help.
    keisha

    #7593
    Avatar of Tracie
    Tracie_PKU
    Member

    I hear ya girls,
    I was made fun of my whole school experience. nThat includes my sisters 3 of them.
    I guess that is why i became so aggrressive in school. nBy the time i hit highschool i was known as Rocky( The boxer ).
    I’m sorry i got sick of hearing all the comments.Plus my family( Dad) was the one who told me to go out there and take care of it.
    So i did.Now as i am older i don’t even tell anyone about it.
    I just say i’m a vegan or allergic to protein. nSometimes that is just the beginning. nMy husband knows more about my condition than i do.
    I just can’t focus as well.
    Anyways take care,
    I am always on if you wanna talk. nTracie-PKU

Viewing 10 posts - 1 through 10 (of 10 total)
Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional