PKU.com Community Discussion Forum Generation PKU has anyone herd of the new blood testing device?

Viewing 15 posts - 1 through 15 (of 31 total)
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  • #4804
    Avatar of Maddy
    gotpku1992
    Member

    it’s supposed to be a kinda big box like thing that somehow records your blood level in approx. 5 mins. i herd of it in a PKU magazine, but ever since, nothing has been said about it, and it really bigs me cus that would REALLY help improve my life! has anyone herd anything about it?

    #4807
    Avatar of Breanna
    BreaMarie91
    Member

    My mom had mentioned that they were trying to make something like that but that is all I heard, but yeah that would be cool. nBreanna

    #4810
    Avatar of Maddy
    GotPKU
    Member

    i think it come out in a year! uhh i hate having to wait for the results. im allways anxious to find out what they are, my last result was the best i ever had! i was really happy! it was 100, which i think is a bit low! but oh well, if i keep it up, i might be able to have more grams of protein! YAY!lol

    #4817
    Avatar of Breanna
    BreaMarie91
    Member

    I was just wondering where your levels are supposed to be at because someone said when you do bloodtests sometimes they are counted different (like phes and exchanges and protien are used to count food except this is with your blood level) my levels are supposed to be between 2 and 6 nBreanna

    #4824
    Avatar of McDonald
    macaoz
    Member

    Here is the feedback I got from Richard D. Shunnarah, MetGen, Incorporated with respect to the Self Monitoring device for PKU Patients (TI Alert Story – Medical Devices and Healthcare Providers Newsletter Vol 3 Issue 2)
    nMay 26th 2006:
    Thank you for your inquiry.
    MetGen

    #4825
    Avatar of Breanna
    BreaMarie91
    Member

    Does anyone know if it will take the same amount of blood or if it will be less or what?

    #4826
    Avatar of Maddy
    GotPKU
    Member

    I count my blood in Micromolecules. i have to be DEFINANTLY under 400, ( i rearly am, oops!) and around 250 is perfect. what do you count in? your results seem so much easier, im gonna start trying to convert into the American system of PKU. Someone once said your supposed to count the protein in apples. do you ever? For fruits, unless they have mega seeds (strawberries, rasberries, etc.) i only count bannana’s. Also since you don’t count in grams, how do you convert the amount of protein from the back of packages? (nutritional information)

    #4835
    Avatar of Breanna
    BreaMarie91
    Member

    Actually to tell you the truth I’m not sure what my levels are counted in, I’ve never actually asked but all I know is my they are supposed be between 2 and 6 in whatever they count. Grr! Now that’s going to bug me that I don’t know, I’m gonna have to ask my dietian . We actually have a phe book that has a huge list of foods and how much phe they contain, do you have a book like this? Anyway I have to look foods up in there and it will tell how much phes the food has. And I really don’t count fruits accept bananas and things like necturines (I think those are the other fruit I eat alot of that has alot of phes in it). nBreanna

    #4843
    Avatar of Maddy
    GotPKU
    Member

    how much PHE do you count necterines as? Yeah, i do kinda have that ‘book’ my diatretion ( i can’t spell that, lol) printed one out, but i hardly use it. i just look up protein in the nutrientional information on the back of the food packeges. i just looked at my old results, and i think you count in milligrams/L. wicked, my levels don’t look so disasterous when i look at it like that!!!! since september 2005, lowest level has been 1.7, my highest has been 14.5, and my best has been 4.7. im normally high, but recently iv’e been getting better.

    #4852
    Avatar of Breanna
    BreaMarie91
    Member

    I think necturines are about 40 or 45 phes but I’d have to look it up since I can’t remember because I haven’t eatten them in awhile. I think my highest in awhile has been around 13 and my lowest was maybe 4 I don’t know exactly what it was right now. Our trouble is that we always forget to do the bloodtest every month like we’re supposed to.

    #4854
    Avatar of Maddy
    GotPKU
    Member

    wow, your good! from now on im gonna do everything the american way! wish me luck!, i gotta go and try to find something for lunch!

    #4855
    Avatar of Breanna
    BreaMarie91
    Member

    Lol, trust me I’m not that good. Hey if you come back on do you know if Jello is free? because we have some and I was going to make it for my younger sisters but I couldn’t find in the phe book home many phes it is.

    #4857
    Avatar of Maddy
    GotPKU
    Member

    jello is free?? JOY TO THE WORLD!!!!!!!!!!!!!!

    #4860
    Avatar of Breanna
    BreaMarie91
    Member

    No I was asking if jello was free, because I wasn’t sure and was going to make some for my little sisters but I decided not to until I decide to look it up in the phe book (lol I’m being lazy right now and don’t want to get up to look) But when I do find out how many phes are in it and if it’s free I’ll let you know.

    #4866
    Avatar of Maddy
    GotPKU
    Member

    yeah, i thought it might have Gelatin in it, but im not sure. In England there is a kind of jelly i was allowed, but i can’t remember what it’s called. oh well. i havn’t had a doctors appt. in ages (sry really random) but it’s been a year i thing! (not good) oh well. I hate ordering food through my doctors, it allways takes AGES to come!!!!! it’s really annoying! i still havn’t gotten half of the food i ordered (as i allready said) almost a year ago. it sucks, it was the good stuff that didn;t come either! have you herd of chocitas? (or something like that) they do have protein in them, but there really good!

Viewing 15 posts - 1 through 15 (of 31 total)
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