I wanted to ask a question regarding formula choices. I have been off of formula and more or less following the low-protein diet for the past ten years. To make a long story short, I have recently decided that it would be best for me to stick to the low-protein diet and also to start drinking the formula again. My dietician has been sending me all sorts of samples from various companies for me to try….and after trying them I can already start to feel a difference! I feel so much better…..anyway….I was wondering what type of formula people are taking, likes, dislikes, why you chose that particular formula over another. Any information I could gather from my peers would be much appreciated! Thanks!
I take the Vitaflo PKU express coolers, Xphe Maxamum juice boxes and Phenylade. I like the coolers and juice boxes a lot because there very low in volume and convenient. I’m drinking the Phenylade partially because I like the taste, but also because my dietitian recommended it. I’m on Kuvan and my phe intake is higher now, so I’m drinking Phenylade so that I have something to add regular milk into if I need extra phe.
Yep, I have classical PKU. Kuvan is nice. I went from 300mg of phe to 1030mg! For the most part I’m eatting regular bread and tortillas now. I haven’t really tried a lot of other foods and the foods that I have tried I like our low protein versions better. If you try Kuvan I hope you respond!!! nBre 16 CPKU
ya i did the Kuvan trial before it was approved by the FDA…didn’t work on me though…sadness!! but to answer your formula question even though i’m a little late haha, i just got on Phenylade Essential, which is soooo delicious! it tastes like a milkshake seriously i have no problem drinking it and it makes staying strict on my diet a breeze! It also has a whole lot of vitamins and minerals and i have so much energy now and i just feel 100% better than i did before it!
tara: i don’t take a liquid formula. i did for a long time, but not consistently. i thought it was a pain to always carry around containers or packets of powder and juice. keeping it cold is also a pain!! the aftertaste of formula grosses me out too. i always need to chew a piece of gum afterwards if i dont want to smell like dog food!! i now take Phlexy-10 tablets. formula in pill form!! i have to take 60 pills a day, which sounds like a lot, but it’s not really that bad. i take 20 pills 3 times a day. i can take 2 pills in my mouth at a time, so it takes me no longer than 5 mins to take 20 pills. the pills also contain 3 grams of fiber per 10, another benefit!! after taking pills, i dont have a nasty taste in mouth either. so if you dont mind taking pills, these work really good!!