I have noticed a lot of people really have a hard time getting their drink down. I have tasted a lot of samples out there that really taste like crap. It makes me wonder if the people making this stuff ever got the genius idea of tasting it before they try selling it! LoL
But I have been drinking Phenyl-Free 2 for probably about 20 years and I love it! If I don't drink it for a couple of days I will actually start to crave it.
Any other Phenyl-Free' ers out there? Or maybe someone who can recommend a good formula?
jennifer92300
User Posts:
1
Re:Formula suggestion Posted on:
September 26, 2007 18:10 GMT -1:00
I actually have avery hard time drinking my formula too. The only thing I can drink with no problem is Phelxy 10. I love it. It sort of tastes a little bit like snapple and doesn't have a bad aftertaste.
Hope this helps
Jennifer,34 NJ
CPKU
mpings
User Posts:
3
Re:Formula suggestion Posted on:
September 27, 2007 11:41 GMT -1:00
Oh, good! I just got a few packets of the Phelxy-10 add-ins from my doctor. I was wondering how they were going to taste, usually I don't like the samples I get from my doctor. Snapple's good and no after taste is even better!
Rosin
User Posts:
2
Re:Formula suggestion Posted on:
September 28, 2007 10:51 GMT -1:00
I too have PKU. I have been off my diet since I was 5 and have tried multiple times over the past 13 years to get back on my diet. I have been back on since June and have been doing very well. My biggest problem with the diet always has been the formula. I too have tried all kinds of formulas and settled in with the XPhe Maxamum unflavored. The others I have acutally drank over the years have been the PKU3 (mega yuck), Orange flavored Maxamum (not good, but ok, but caused me stomach problems). I have also tried the vanilla phenylade which was really really good, even without adding anything to it other than water, but my dietician did not recommend that I switch to it because it had a high saturated fat content which is not good for you, so I have stuck with the XPhe Max. unflavored. I had a hard time figuring out how to mix it so I could easily drink it. I started making fruit smooties (usually Strawberry). They are yummy. Really good. I started out by using the PKU Perspectives Vanilla Ice Cream Mix and some water, then I switched to Rice Dream non-dairy Ice Cream, which was easier to access then ordering the other, and now I use the Rice Dream liquid. I mix my formula with 16oz of Rice Dream liquid, 140g of frozen strawberries and blend. When I need the extra calories I add honey. This is the only way I can drink the formula.
breamarie91
User Posts:
117
Re:Formula suggestion Posted on:
September 30, 2007 11:21 GMT -1:00
I've tried more formulas then I can even count in my life time...and I'm only 16. When I was three up until about last year Sept I had massive issues with finding a formula I liked. They either tasted awful or gave me stomach problems.
Last year Sept I finally got a new dietitian (my past dietitian was anything but nice) and since then my levels have been like 100 times better. Plus now I drink PKU express Coolers (orange and purple) and XPhe Maxamum juice boxes (orange and berry) and I love them. It's weird though because now I'm finding that if we get formula samples in the mail and I try them I actually like them where in the past I would have puked if I tried half of them. Just in general I think in the past year I've become so much less of a picky eater.
Breanna 16 CPKU
lorelei
User Posts:
18
Re:Formula suggestion Posted on:
October 2, 2007 14:59 GMT -1:00
I've got MSUD, not PKU, but MSUD is related - and the formula tastes vile as well! It's amino acids but not leucine, isoleucine and valine. The only way I can have it is by making it into a paste with ribena and gulping it down with a lot of water afterwards. You really think they might taste it first, and put a not of apology on, don't you! Any suggestions would be VERY welcome!
breamarie91
User Posts:
117
Re:Formula suggestion Posted on:
October 2, 2007 15:08 GMT -1:00
Lorelei-Can you mix your formula into foods? If you can then my only suggestion is to try and mix it into something with a very strong taste so hopefully you won't taste it.
lorelei
User Posts:
18
Re:Formula suggestion Posted on:
October 3, 2007 03:45 GMT -1:00
Thanks - thought it would work so gave it a go, but NOTHING seems to work. Even tried making scones with a whole jar of marmite (I'm a 'love it' person). Only thing that seems to make it a little bearable is a jar of honey, 50g of sugar and warm - but it still has that sort of bitter taste, you probably know the one I mean! Will keep persevering with this suggestion though...thanks for it
lorelei
User Posts:
18
Re:Formula suggestion Posted on:
August 10, 2009 17:50 GMT -1:00
Breamarie - glad to hear you've tried tons of formulas. i am thinking of trying my sixth I think, but it's only the second time I have been the one to ask to change. The other times it was Mum trying to help us when we were little. The only problem with the NHS here in the UK is you feel guilty if you milk it too much - as in trying out lots of new swanky formulas. I feel like I am messing them around - obviously I can't help having MSUD, but have others have this problem? Oh, and I should add, as I saw you were on PKU express cooler - I am currently on MSUD express cooler!
rapunzelfasz
User Posts:
18
Re:Formula suggestion Posted on:
October 6, 2009 04:38 GMT -1:00
hey kids! i'm 18 and in college. currently i'm on three packets of XPheMaximum a day. it's not bad at all but i have to dilute it pretty well or it's unbearable. also, adding kool-aid helped me a lot when i was a kid taking Phenex II.
