PKU.com Community Discussion Forum Adults and PKU new and bette rthings

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #7809
    Avatar of billyjoe
    pkubl_ter
    Member

    Hi I have been reading all these new advances liek kuvan which in it’s early testings I was a non responder to ..is grat and all
    but one advance i would like to see is a device which measures phe levels just like a diabetic meter registers glucose levels is any one out there interested in this ?
    billyjoe

    #7810
    Avatar of Tracie
    Tracie_PKU
    Member

    Heck Ya PKUBlaster, nThat would be awesome.
    No more waiting 4 weeks for results,then having to do another test immediatly when getting the 4 weeks results back just to see if you’ve gone down anymore. nCould u imagine how much time that would save?
    I would be first in line trying to get one.
    Talk to you soon, nTracie-PKU

    #7813
    Avatar of Breanna
    BreaMarie91
    Member

    Billyjoe, nThey have created something like this. It’s not as small as a glucose meter, but it apparently gets the job done. Last time my dietitian spoke with my mom about it (they talk all the time) she said that they are just waiting for funding so that they can get it out on the market.

    #7822
    Avatar of billyjoe
    pkubl_ter
    Member

    i just spoke to my doctor today and he has not heard anything relating to this , but good news ..my phe level is 21.8mg/dl on my way to under 20 mg/dl

    #7828
    Avatar of Breanna
    BreaMarie91
    Member

    Here is a link to an article about this monitoring device: http://gtresearchnews.gatech.edu/newsrelease/pku.htm
    I know it was writen in 2004, but my dietitian has been keeping updated about this.

    #7841
    Avatar of Nick
    arkham
    Member

    4 weeks to get a level back? Is that common? I get my blood draws on Mondays, and usually get my results back Friday of the same week. I didn’t this week, but that’s rare, and when it doesn’t come in by Friday, it’s always been in by Tuesday of the next week at the latest.

    #7843
    Avatar of Tracie
    Tracie_PKU
    Member

    I think it might be common for me,cause of my location.
    I get my blood drawn then it gets airmailed to Childrens in LA CA,and i normally have to wait almost two weeks before i see any results.
    I have some Lancetts now,and i am hoping it will be faster,But i honestly don’t know.
    Tracie-PKU

    #7846
    Avatar of Breanna
    BreaMarie91
    Member

    Yeah four weeks sounds crazy. We usually do blood tests on Friday morning, mail them out later that day and we get our levels by Tuesday. Now that I have a five month sister who also has PKU we sometimes get our levels sooner because they rush babies levels.

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