formula amounts

    This site uses cookies. By continuing to browse this site, you are agreeing to our Cookie Policy.

    We are happy to see you visit us as a guest.
    Some functions require a free registration. Become a member!

    • RE: formula amounts

      I'm suppose to drink atleast 45g worth of protein from my formula. But I usually have like 60g.

      I would give you an exact amount of fromula I drink, but since I'm drinking Coolers, XPhe juice boxes and Phenylade what I drink in the day is never the same.
      ~It's not about waiting for the storm to pass, it's about getting out there and dancing in the rain~
      Breanna Hardy 19 CPKU
    • I get 60grams of formula each day sometimes I need more but don't take more. Tomorrow I have my appointment with the dietitian and on Tuesday I have a appointment with my endocrinologist which will be interesting as I haven't seen her in a year and really don't want to see her at all. I will just go in there to say hi and bye as last time she treated me so badly that I don't want to go back but have to.
      debbie colyer
    • I'm prescribed 40 (2 PKUcoolers20 everyday) I usually take 2, but sometimes I only remember to take one, and some days I'm hungry for more.

      I wonder if it's acceptable to do that; to go over sometimes and under sometimes. It averages out to my prescribed amount, so I'd think it's okay...

      I'm donating blood today, so I'll probably have 3 or 4 coolers today and tomorrow. I wish those things didn't taste so bad, though.
    • huh. I wonder why I'm only told 40, then? That's weird. Maybe I'll ask next time I'm there (which will be in august).

      I wish I could just call my dietician and ask, but my insurance won't cover it, so I don't really have a dietician. All she does is reorder my formula.
    • 40g doesn't sound wrong or anything. Up until about a year ago I was on 40g of Phenylade (4 scoops). I'm on 45g now because the coolers/juice boxes that I drink are 15g of protein each.
      ~It's not about waiting for the storm to pass, it's about getting out there and dancing in the rain~
      Breanna Hardy 19 CPKU
    • It is interesting sounds like it just depends on where you come from in the world what the medical professionals recommend.
      MamaSteve86 sorry to hear that you can't just e-mail the dietitian really makes life hard for you.
      I felt so out of it when I saw my dietitian on Monday I just couldn't speak my head was hurting so much and I felt so exausted.
      She told me to do a blood test when I got home which I did so the results will be interesting this time around.
      debbie colyer
    • I think it's also based on us personally. Like for example, next time I go to PKU clinic (which I think will be April) if my weight isn't good they're going to want to higher my formula intake. When I went in last month they said I lost like 2lbs in one month. That isn't a lot, but they want to make sure that I don't loss anymore weight.
      ~It's not about waiting for the storm to pass, it's about getting out there and dancing in the rain~
      Breanna Hardy 19 CPKU
    • Well they said with all the calories I'm getting from not only formula but food aswell they would think I would be doing the complete opposite of lossing weight. But I won't know what they want to do about this until April.
      ~It's not about waiting for the storm to pass, it's about getting out there and dancing in the rain~
      Breanna Hardy 19 CPKU
    • it was suggested to me to switch to the coolers when i mentioned i was trying to loose weight , as i get 1500 calories a day when i don't go to the gym and 1830 when i do , that includes my formula . which is the XPhe tetra packs and they have 160 calories each so i have to lower my food quiet a bit to include my milk. i hear the coolers have way less calories, i did try making the switch cause i think the cals were like 60 per one. but they made me really sick. i here there is a new flavor -pinacolada id like to try that one!!!!!
      Amanda Cosburn LPN
      28CPKU
      Kamloops, BC Canada
      www.pkuamanda.com

    • I have been fighting high Phe levels this week and have been feeling quite crappy especially Monday and last night. I had a dietitian's appointment on Monday afternoon and I was so exausted and had a headaches, having some panic attacks as well even with taking all my prescribed formula so my dietitian told me to go home and do a blood test which I did and it came back at 880micromoles which is 14.7mg. I am sitting here debating whether I should go back to having two lophlex sachets and one of the coolers a day or stick to the one lophlex sachets a day two coolers a day. I actually walk half an hour to and from work. I get one hour walking time a day.
      debbie colyer
    • Amanda, they do have a pina colada flavored cooler, but it is made by Cambrooke, not Vitaflo. So the calories and other nutrition info could easily be very different from the PKU express coolers.

      Debbie, that must really stink majorly!! Why are you thinking about changing your formula? For weight or your levels? Anyway, I do hope you feel better!
      ~It's not about waiting for the storm to pass, it's about getting out there and dancing in the rain~
      Breanna Hardy 19 CPKU
    • I get 50 grams per day. I'm on phenylade amino acid blend and love the taste. However, since I've gone back to counting phes really closely I've noticed that I waste a lot of phes on the juice I mix formula with. I only mix with 100 percent juice and refuse to mix it with any artificial juice such as Sunny D. I am going in to clinic on Tuesday and might switch to something else. I also could use more calories with the amount I burn off being on my feet teaching and working out. I am constantly hungry. Grrr!
      Ali Dietrich
      24 PKU
      Rockaway Beach, OR (USA)
      My PKU Site: The PKU Place