PKU.com Community Discussion Forum Adults and PKU Low Protein formulas

Viewing 9 posts - 1 through 9 (of 9 total)
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  • #5170
    Avatar of Lettice
    charlie_tc
    Member

    My adult daughter has recently decided to go back on her PKU diet. She was last on it about 18 years ago when she was pregnant for her son. I’ve offered to help her get started. Her question is, do they still have a low protein bar that she describes as having fruit filling, a white “yogurt” coating and foil wrapped” She like those and felt it would make her diet much easier if she could have them, or something similar to them. Anybody out there got any ideas or suggestions? I’ve been searching thru different low protein foods online and haven’t found anything that quite matches her description. PKU MOM

    #5172
    Avatar of Breanna
    BreaMarie91
    Member

    Hi, my name’s Breanna and I’m 15 and have Classical PKU. I think what your daughter might be talking about are the phlexy-10 bars. I took thoses from when I was about 8 until recently. Also if you can’t get a hold of those I’m sure your daughter will beable to find something she’ll like since alot of new things have came out. For example the PKUexpress coolers (they come basically in juice pouchs already made and you just shake and drink) and the phenex chews are easy to take aswell. But I hope your daughter can get a hold of what she wants. nBreanna

    #5212
    Avatar of Danielle
    danirp24
    Member

    i am 23 years old and am recently trying to get back on diet. i have been off for about 9 years, and this is really hard for me. one thing that will make this easier is to find a formula that tastes descent and doesnt make me want to throw up when i drink it like all the other ones i have tried. any suggestions would be much appreciated. also for the top one your daughter had a son huh i am just learning about us being able to have kids any info that you can give me on that would much appreciated.

    #5349
    Avatar of michael
    chargers1
    Member

    do you know were i could get the express coolers, or the chews?

    #5350
    Avatar of michael
    chargers1
    Member

    or really anything that i could take that would be ok? i was on the phone with the university of iowa genetics doctor and she said they are working on a pill form.

    #5354
    Avatar of Breanna
    BreaMarie91
    Member

    Well they just recently stopped making the Phenex chews, but you should beable to talk to your doctor or dietian and ask them about new formulas they have out there.

    #5874
    Avatar of Meaghan
    mayrogers13
    Member

    Hey my name is meaghan and im 18 and have CPKU. I actually take those pills you are referring to . They are called phlexy-10 tablets. I take 40 a day but have to split it with formula (although it is 1/2 the amoutn i would normally take). Doctors dont like to prescribe pills solely because they have no caloric value to them. But they are really easy to take (a little larger than most vitamins) and extremely convienent (i take them during classes at college when im too lazy to take them when i wake up.) Ask your doctor about them. I tried another pill, dont remember what it was called, but I had to take 108 a day, so dont try those.

    #5879
    Avatar of Breanna
    BreaMarie91
    Member

    I was taking the Phenex chews for awhile, but I had to split it with formula to because otherwise I would need 100 of them (I could do it but my dietitian didn’t want me to). They were like the size of nickels and I thought they were actually pretty good, but they discontinued them so I had to switch. nBreanna

    #6488
    Avatar of
    Anonymous

    i drink the Xphe maximum drink boxes. they are exactly like juice boxes but milk. no mixing, no string or shaking, no powder or measuering.. its just ready to go .. i keep mine in a mini fridge and drink it 4 times a day( each meal and before bed) it comes in 2 flavours. Forest berry and orange. i have tried many milks including all the phnelyades, and the coolers. the xphe is by far my favorite. and i credit it for helping my bring down my levels. before i would skip milk or not drink it all casue i didnt like it. now i look forward and prefaer drinking it. and wish i could drink more. and i can soooo see the effects when i dont drink my milk.. its scary ! one time they actually ran out of my milk (first time in 20yrs) i was without for 3 days and i was so tired, cranky, senistive and just plain awful.. i never want to go there again. u can find pictured i have taken of both types of my milk on my website and u can read diary entires that i have writteen about my pku exspernaces. (theres along one about when i ran out of milk!) ni would highly recommene that anyone try the Xphe maximim drink boxes!!!!!!!!!!!!!!!!!!!!!

Viewing 9 posts - 1 through 9 (of 9 total)
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