Community Discussion Forum That’s PKU life! Teens with PKU

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #6298
    Avatar of melinda

    My daughter is 14 and wont drink her formula. Her leavels have been high for sometime now but she refuses. Her doctor told her Monday how important it is for her to drink it but she just dont like the taste anymore. They have a new juice drink and she tried that but she dont like it…Does anyone have any suggestions on how to cover up the smell and the taste? We have tried everything we can think of with no results.

    Avatar of Jack

    I’m 14 and I didn’t used to drink the formula either but some time 4 years ago. I was at my Grans house which is near chester. I Didn’t drink my formula and my Gran said that I couldn’t go to her house no more if I did not drink it, so after about 35 minutes I Just golloped it down really fast and I’ve drank it ever since. Well more less.

    Avatar of Breanna

    I’m 16 and I used to have big issues with drinking my fromula up until last year September. We were going for a PKU appointment and did a level about a week before and my tyrosine level was so low that they couldn’t even read it. When I went I met with my new dietitian and she brought in a bunch of samples for me to try.
    I guess just trying new things. There are Phenylade: chocolate, orange, strawberry, vanilla, phenylade40 (citrus and unflavored), amino acid blend (which you mix into something like juice). There’s Phlexy-10: capsules, bars, drinks (I can’t remember the flavors) and the add-ins which you can add into food and your not supposed to even taste it. Then there are Vitaflo: gel, coolers. Sorry I’m throwing out millions of formulas, these are just millions of formulas that I’ve either taste tested once or twice or actually drank for awhile.
    Also have you tried mixing in something like nesquik chocolate or strawberry syrup? Or when I went to a PKU camp this past summer they showed us something call Sip Ahh straws. They come in chocolate, cookies and cream and strawberry and they have the flavoring in the straw so while you drink through it you get the flavoring aswell. They have no phe and we found them at a dollar store near us. My sister whose 8 wouldn’t drink her formula for awhile (which was weird because she has always been the one out of the two of use who drank her formula all the time) but with these straws she is back to drinking her formula ALL The time.
    I hope this helps! nBre

    Avatar of

    i had a horrible time with my formula growing up.. all the way till i was 19 then i saw some new samples of milk on a website and ask my dietican if she could bring it and i was hooked. they were the Xphe maximim drink boxes. no more powder or mixing!! they could just go in ur fridge for ur convincece and take with u to work , school or traveling. they come in 2 great flavours. forest berry and orange .. for a while i was on both but then i jsut drank the orange. i have been on them for over a year. i just tried the new pku coolers too.. there sorta the same but they come in like “bags” and they come in purple and orange , but to me they sorta taste like finstone vitamins. i prefar the xphe maximum ones. i strongly recomend them for anyone looking for something new or quick and easy!


    I just tried this stuff the other day.. nit’s called something…10. phenyx or something like that. anyways, it’s a tasteless powder you sprinkle on food..soups, noodles, mac and cheese, whatever..and it blends right in. You seriously cannot taste it at all..but the only thing i dislike was that you could feel the texture of it sometimes..maybe i didnt stir it very well. i hate having to take time out of the day to do something so different from everyone else and drink “my milk” the powder really makes me feel better because i’m getting my formula AND i dont have to taste it =]

    Avatar of Breanna

    Hey Tiffany, I think your talking about the Phlexy-10 Add-ins. I tried those when I was at PKU camp this past summer.

    Avatar of Meaghan

    I had a horrible time with my medicine from the time I was 6 till the time I left for college. My levels would rarely be under 10 when they wanted them to be at 3. For me, it was because I didn’t understand why I couldn’t have everything else. Or people were making fun of me for not eating cake and cookies so I would. I would say first see if there are any other types of medicines your child would like, I am on 3 different types and I get to mix and match each day as long as I get the equivalence I was told to. Second, ask if anyone is given them a hard time about having PKU, sometimes that can really affect what your child eats. And finally, WITHOUT lecturing, make sure your daughter knows how important it is to take her medicine everyday. Hope all goes well Meaghan 19 in college w/ CPKU

    Avatar of Tracie

    Hi mindy, nWhen i was younger i was on LOFANLAC(i’m sure i spelt that wrong),but i liked it . nMy mom would mix the base of what i needed, and then put in Powder Chocolate.Very Low phe. nPlus it killed the nasty flavored.
    Also you may want to let him or her try there own recipe.
    IE: Formula,Strong flavored friut, and a orange juice base.Throw in some ice and it is like a smoothie.
    Just some drink for thought.
    Take care, nTracie

Viewing 8 posts - 1 through 8 (of 8 total)
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