PKU.com Community Discussion Forum That’s PKU life! thats pku life

Viewing 6 posts - 1 through 6 (of 6 total)
  • Author
    Posts
  • #5191
    Avatar of angiebaby
    angiebaby
    Member

    about 2 weeks ago went to ut hospital. when i was youger my level was in the 20,s and now my blood levels are is about 10 or lower but not higher than 13. they said that is the lowest it has ever been have u all got the pku cook book cool thingsin there. plus things in there u can make with the formula if interested let me know i,ll post some on here what kind of formula is everyone on right now on phene 2 v

    #5193
    Avatar of Breanna
    BreaMarie91
    Member

    Congrats on getting your levels down! Since I got a new dietian I’ve been working to get mine down aswell. I figure it’s like the saying “new year, new beginning” accept for me it’s “new dietian, new beginning.”
    Oh and if your talkin about the virgina schuett book then yep we’ve got it! and oh I drink the pkuexpress coolers and my sister drinks the phenex 2 unflavored. nBreanna

    #5194
    Avatar of angiebaby
    angiebaby
    Member

    is your the 3rd edition. my is the 3rd edition.the year is 2005 /2006 do u have that one

    #5196
    Avatar of Breanna
    BreaMarie91
    Member

    Yeah I think it’s the 3rd edition, but I’m not positive. I would look but my mom has it with her. She’s giving my aunt a recipe that she’s going to make for me and my sister when we spend the night with her in about a week (I’m hanging out with my cousins who are my age). I used to cook all the time for me and my sister but I kind of got out of the habit and my mom works alot but I’m gonna try to go back to baking stuff alot.

    #5221

    congrats on getting your levels down!!!right now i am trying to get my blood levels down too!! when you go out to eat what do you usually get????? cuz most of the time…i end up getting potatoes and i know that they are high in phes!!!! Also, do you have any suggestions on how to get my levels down and how i cannot sneak every time I see something tempting to eat!!! well anyway talk to you later!!!! nKayla

    #5223
    Avatar of Breanna
    BreaMarie91
    Member

    Kayla- nMy name’s Breanna, I’m 15 and both me and my 8 year-old sister have PKU! Yeah when I go out to eat like to mcdonalds I get fries and some of those apple dippers and then usually just fries at other fast food restraunts. If it’s a sit down restraunt I usually get fries and a salad. I was just curious how many phes you get? Me and my sister get 300 phes (or 20 exchanges). I know it can be tempting at time, now that I’m in highschool (I’m a sophmore) there are so many different different things in the lunch lines and it gets hard. I guess it has helped alot after last year when I started telling alot of my friends about my PKU (before only my best friends knew). Now all of my friends kind of look out for me and try to help stop me from eatting things I can’t have. I guess it just takes time and patiences, if you want to stop sneaking you got to tell yourself no (Yeah I know easier said then done). I’ve been sneaking for basically my whole life and I’m just getting myself under control now. Anyway I hope things go good for you and I’m here if you ever want to chat! nBreanna

Viewing 6 posts - 1 through 6 (of 6 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