PKU.com Community Discussion Forum Adults and PKU mental illness caused by pku

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #7299
    Avatar of Thomas
    montie16
    Member

    i am pku and i am 29 and iw as wondering if anyone can give me an idea of if there is any causes of mental illness with pku other then the mental retardation. I have been wondering what kind of illnesses if any are associated with pku. thanks for your help

    #7619
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Montie,
    I would say you get more illness’ when you are off diet. nLike myself i was off for a number of years,and now i have anexity,Moodiness,outbursts(mean). nAs for my brain you do damage as you take in the WRONG foods.
    I have not had an MRI recently,but iam back on diet, and feeling great. nAlot of the mental comes from not being caught at birth.
    May i ask are you on diet? nWhat kind of PKU do you have?
    I am Borderline PKU. So my body reaksdown some protien they just don’t know why?
    I am strict Veggie,but can eat regular cheese,and tofu.
    As for other PKUers they are not able to eat some of the items, and that brings them into nLow-Pro foods.
    I hope i was some help.
    Take care talk to you soon.
    Tracie-PKU

    #7670
    Avatar of Giulio
    Giulio
    Member

    Hi,
    I have been off the diet for years now and I have not felt any affects… I am in the greates shape of my life and I am in unversity studying. I am able to obtain marks that are better then snmy of my other classmates.
    Depending on the type of PKU you may have and how rigourous your diet was when you were growing up- these factors will all determine the future on how well your body will respond to higher Phe levels.
    I am now looking into KUVAN in order to lower PHe levels as precautionary measures…
    Giulio

    #7671
    Avatar of Tracie
    Tracie_PKU
    Member

    HI Montie, nContact Biomarin ,and they will give you a 45 day free supply to try.
    Thanks for your friend req.
    I’m always on,and love to talk.
    I live in Asotin Wa. nPopulation 1100 people,and mostly kids.
    Thats awesome that you are doing so well.
    I will talk to you soon.
    Take care, nTracie-PKU

    #7672
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Giulio,
    Thanks for your friend req.
    I love to talk all the time.

    You look very healthy,and congrats on semi-pro
    soccer.That is awesome.
    My daughter is just starting to gat involved with soccer,and its loads of fun.

    As for myself my sport is ice hockey.
    I love the action,and contact.

    Keep in touch,i’m always on.

    Take care,
    Tracie-PKU

    #7705
    Avatar of Jennifer
    jenn_harney
    Member

    yes, there are many mental illnesses associated with pku and high blood phe levels!! phenylalanine in your bloodstream builds up in your brain and prevents the formation of myelin, which is a conductor-like material that surrounds your neurons in the brain. no myelin means brain signals don’t travel as fast. hence the slower functioning and lower iq. anxiety, depression, and seizures can also be caused by too much phenylalanine in your blood. i dont know about other conditions for sure, but it would only make sense having too much of something in your brain could mess it up in a BUNCH of ways. :-S hope this helps!

    #7736
    Avatar of Rebecca
    pkusince62
    Member

    I’m a 46 r old female with late-diagnosed PKU who didn’t start the diet until I was 4 yrs old and was taken off of it a year later. So I have been off the pku diet since 1967. Effects from not being on the diet are as follows: tremors, mood swings and anger, some depression, and a few tics.

    #7740
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi PKUSince62, nHave you considered going back on diet? nThe Anger part would go away as well as depression!
    Just something to think about. nTalk to you later, nTracie-PKU

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