Formula Choices

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    • Formula Choices

      I was honestly not aware there were so many choices for formula out there. All I ever knew about was Phenyl-Free 2 by Mead Johnson. I don't mind it that much, but now I am aware there are PKU chocolate bars out there! I ordered some free samples from Phenylade, but I was wondering if anyone here could give me any information about them? Like, how many do you have to eat a day? I ordered a sample of everything they have.

      All other formula products seem more convenient and yummier than Mead Johnson's. I want to try PKU coolers. Does anyone know of any other options? Also, I am worried about resistance from my clinic because they are funded by Mead Johnson. Any suggestions?
    • RE: Formula Choices

      I've gone through more formulas in my life then I can count, so I'm basically the queen of formulas ;).

      Phlexy-10 has drink mixes that come in blackcurrant and tropical, bars that are kind of fruity with a yogurt type of covering, capsules, tablets and the add-in which is something you can add into your food without tasting it. Phenylade also has something like that, but it's for mixing into drinks. With Phlexy-10 products I think you have to take other vitamins and stuff, atleast that is what I had to do when I was like 10. There is Phenex-2 which comes in unflavored, vanilla and I think citrus (there might be more). There's XPhe Maxamum drink mixes that come in unflavored and orange and juice boxes that come in berry and orange. The vitaflo PKU express coolers come in orange which is sort of like a citrus and purple which is sort of like a grape or berry flavor. Vitaflo also has formula that you can make into like a gel or pudding consistancy. Cambrooke just came out with a cooler that is pina colada flavored. Then of course there are all of the Phenylade products.

      That's all that I can think of for now, but if I think of more I'll let you know.
      ~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 I have to drink 3 coolers a day, but it depends on the person. For the bars I'm not sure because when I took them my dietitian was a butt-head and told me I could only eat one a day. Her reason? She said we have to save them for the working adults and that they aren't for children who supposively have it easy.
      ~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
    • Hey Brea,

      How interesting about your dietitian attitude towards the bars. Usually the dietitian tell us that the bars have too many calories in it for us and maybe the younger people will be able to tolerate them better than we do. Interesting. Nobody seems to know much as they are learning as we grow it seems sometimes to me.
      Have fun!
      debbie colyer
    • Debbie your dietitian probably is right ;) but my dietitian used to love to tell me that basically everything and anything I wanted to try was for the adults. I had a choice between the 4 phenylade flavors when I was little and I was suppose to just keep quiet and pretend I liked it. Oh and she told us some things were only for babies, but when Erica was a baby my mom would ask if she could try it and my dietitian would say no.
      ~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
    • We get many formula choices. i love the bars but will only do 2 a day cause of rhe calories. each bar is 10 grams of protein. i need at least 55 to 70 aday from formula. PKU express was just approved by our state. it is one of my favorite formulas. I switich formula as often as people change underwear. lol.


      now Mrs. Schreiner
      Laurie Schreiner
      PKU it isn't just a kid's disorder
    • I really want to try the bars. Does anyone know how many calories are in them? They would be really convenient, as well as those flavor packets, because I could take them on the go. I'm gone for most of the day and it makes eating low/drinking formula really difficult.
    • I take nothing but Phenylade Amino Acid Blend. I like it because it doesn't have all the vitamins and minerals in it and that makes it taste a lot better. It also mixes straight into juice, sunny d, or whatever you can think of. I take my vitamins seperately.

      I'll pm you the name and e-mail of a dietician that works for Applied Nutrition. I know her from the PKU camp in Oregon and know that she has worked with a few families on getting the Seattle Clinic to offer choices to people who want them.
      Ali Dietrich
      24 PKU
      Rockaway Beach, OR (USA)
      My PKU Site: The PKU Place