Best Formula Alternatives?

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    • Best Formula Alternatives?

      Hey everyone



      I'm almost 14, and I've been having Phenex 2 for as long as I can remember.. (Unflavored) It tastes fine, but it's not really easy to work with.. and I have to drink it in one of those travel bottle things because if I smell it I'll throw up..



      And about dosage.. I'm now on Kuvan so the protein I get from my formula has to be half the amount I receive altogether.. again, I'm not sure how much that is.. but I'm on 85g of Phenex 2 and 140 phe exchanges. (I typically eat around 120 though, 140 is just simply too high for me)





      Ok, so I received samples the other day from my dietician.. Coolers, Camino Pro, and some ice pops or whatever



      Coolers - First I tried the Orange, it was disgusting, then I tried Red; not as bad as orange, but still not pleasant



      CaminoPro - I think the flavor I had was Fruit Punch? or was it Pina Colada? I don't know, but it was minorly unpleasant. I could bear it, but I did not enjoy it at all.



      Icepop things - absolutely disgusting, threw it out immediately.



      ----



      Are there are any formulas that are actually good-tasting? or any good alternatives? ( like syrups, dressings, etc.)



      My dietician is sending me a dressing sample right now, can't wait to try it because I love salad.. ( I'll let you know how that goes)

      but what else is there that might actually taste good?



      Thank you,

      Mike
    • if you are not counting calories at all phenylade the original ones are really good. but they are very high calorie. they have orange creme, which is great, chocolate,vanilla, and strawberry. i love all the flavors but have had to change cause of calories. the vitacoolers in red and purple are very doable if you can pour them over ice. i dont like the other flavors.
      Kelli
      kelliwrenn76@yahoo.com
      write me anytime
    • I highly recommend Vitaflo PKU express. Ask your dietitian if it's suitable for you. It's low volume formula, you need to drink plenty of water with it, but it tastes good and most important - one you dissolve the powder it's only 2-3 swallows, you don't have to chug a whole pitcher of formula.
      Carpe Diem!
    • Have you tried any of Applied Nutrition's formulas? They make all of the Phenylade formulas. I am currently taking the Phenylade Essentials, which comes in chocolate, orange cream, vanilla, and strawberry. Applied Nutrition also makes Phenylade40/Phenylade60 in unflavored and citrus and Phenylade amino acid bars, which are candy bar imitations.

      SHS has Phlexy-10 formula products that come in the form of capsules, tablets, powder, and add-ins which can be mixed into food. They also make Lophlex LQ 20, which is similar to the Vitaflo PKU Express coolers that you tried. The Xphe Maxamum tetra pak drinks are premade in juice boxes, and they come in both orange and forest berry. Periflex Advance is similar to Phenex-2 except instead of just unflavored it also comes in orange and chocolate.

      My suggestion would be to create a list of the formulas that interest you. Either email the list to your dietitian or bring it with to your next clinic appointment, and ask her which ones you can get samples of. There are so many formulas out there today that I'm sure there will be one that you'll either like or at least be able to tolerate. Good luck!
      ~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
    • im actually going through a problem like this but with my 2yr old..He is on Phenex 1 and 2 (a combination of both) and he loves it the only problem is that he will only have it out of his bottle. We have been struggling to try and get him to start drinking from a cup or even a sippy..He will have water or juice from a cup but not his milk..he takes a sip and hands it back to me..but if i pour it in his bottle..bo problem he'll drink it..So we are now trying periflix orange, chocolate and same kind of deal he takes a sip and hands it over.We've even tried a sample of better milk and nope not out of a cup.I dont know what to do.Should i give it time and let him keep drinking from a bottle or do i seek other alternatives..but what are they??
    • Monika,

      Genavieve is in the same way. She will drink juice and water out of regular cups, but she will only take her formula out of her Nuk bottles. My parents have decided not to worry about it, because it is obviously not an issue of her not having the skills to use regular cups since she can drink water and juice out of regular cups. It is just a preference towards which cup she drinks her formula out of. Genavieve LOVES her Phenex 2 right now, and we do not want to risk her starting to refuse her formula by either switching her to a new formula or by taking her Nuk bottles away.

      Right now the most important thing is that they get their formula in. Maybe it might be a good idea to give it a couple of months and then try again.
      ~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

      The post was edited 1 time, last by Breamarie91 ().

    • Oh man those ice pops are wretched... So are the dressings IMO but some people claim to like the chili sauce one.

      Theres pretty much 3 flavor branches of formula: unflavored amino acids, milky, and fruity.

      I like the milky ones best: Phenylade Essentials, Phenylade 60, Phenex Vanilla, Periflex Vanilla, Cambrooke BetterMilk

      Fruity ones are ok but I'm not really a juice person anyway: camino-pro pina colada and fruit punch, vitaflo coolers, Lophlex, Maxamum juice boxes, Vitaflo express

      The straight up animo acid ones are usually the healthiest but the hardest to get down: PKU2, PKU3, Phenylade MTE blend

      See if your dietitian will send you something besides just the Cambrooke formulas. There are so many ore out there. Good luck!
    • when the time comes to wean her off bottles, try to teach her to use a straw. the smell of most formulas is a turn off. if you use a straw, you smell it less and it is much easier to take. that is how i had to learn to finish all my formula as a child.
      Kelli
      kelliwrenn76@yahoo.com
      write me anytime
    • Hi

      I used to drink milupa PKU3 but I had also problems with the smell. The taste wasn't that but because I always drunk it with apple juice and it was quite good. However now I'm taking Milupa Pku3 pills.
      In my opinion it's the best, because there is no smell and no taste.
      The only problem is that I have to eat 130 pills a day but I got used to it.
      It's so much better than formula!

      By the way, this is my first post so I will introduce myself :) my name is Joanna I'm 21 and I'm from Poland.
    • Hi Maria;

      Totally agree and most also taste horrible, especially the milupa powders (in the cans). I cannot believe those products still exist with all the alternatives we have nowadays !

      I tried a lot of formulas (SHS, Milupa, MetaX, Vitaflo) but settled for the PKU Coolers from Vitaflo.

      Greets;
      Paul van Berkel
      Veldhoven, The Netherlands
      ESPKU Boardmember / Project manager
      paul.van.berkel@espku.org
      espku.org

      Don't complain about the snow on your neighbor's roof when your own doorstep is unclean.
    • Hi All;

      At the last ESPKU meeting Cambrooke introduced BetterMilk in Europe. I am curious, does anyone of you use this product as alternative to the 'classical' amino acid mixtures ?

      Greets;

      Paul
      Paul van Berkel
      Veldhoven, The Netherlands
      ESPKU Boardmember / Project manager
      paul.van.berkel@espku.org
      espku.org

      Don't complain about the snow on your neighbor's roof when your own doorstep is unclean.
    • I'm hesitant to try it.
      DOn't know how much I'll need volume wise. It seems I do best with low volume formulas. Been taking PKU Express for a while, now prefer PhenylAde60 vanilla - it's a new low volume formula. It has a nice milky vanilla taste and fits well into PKU express shaker. the only disadvantage - for now we have only can covered (i.e. small sachets exist but not covered by our government)

      P.S. I got those blood levels stable! you're right - eating familiar stuff helps
      Carpe Diem!
    • Hi Lynsey;

      Bettermilk is a new product by Cambrooke: http://www.cambrookefoods.com/products/bettermilk/ . See the link for more info.

      I use orange, purple and red. Red is the best so far, especially when cooled properly. I don't use the white, unflavored, they are horrible :(

      Greetsz;

      Paul
      Paul van Berkel
      Veldhoven, The Netherlands
      ESPKU Boardmember / Project manager
      paul.van.berkel@espku.org
      espku.org

      Don't complain about the snow on your neighbor's roof when your own doorstep is unclean.
    • thank u 4 gettin bak to me :)

      i only use the orange iv never tryed the red iv been told the red cooler is realy nice iv got a leaflet to try sum i mite order sum samples to try the red cooler dose the red make ya still feel sick sum times ???

      ill deffo have a look at the website n have a scam on the buttermilk producted :)

      where r u frm paul if u dont mind me askin ?

      im frm boston lincs uk

      lynsey x :thumbsup: