Community Discussion Forum Generation PKU soooo…who wants 2 talk? Reply To: soooo…who wants 2 talk?

Avatar of Breanna

Hannah-Well right now my diet is probably very different from yours because I’m on Kuvan. I’m not sure if you know what that is, but it’s the new drug for PKU that was just approved on Dec 13th. It’s suppose to help our bodies break down more phe so that hopefully we can eat more. Well I gave the drug a try and I’m a responder! I went from 300mg of phe and as of today I’m up to 1030mg of phe! If you count in exchanges that’s 20 exchanges to about 68.5. It’s actually getting hard to get all that phe in and I’m only eatting 650phe through food, I have to add the other 380 by adding milk to my formula because my dietitian doesn’t want me to have to skip from 300 to 1030 over night.
As for formula I drink Vitaflo PKU express coolers and XPhe Maxamum juice boxes. My sister who is 9 and has PKU too drinks Phenex-2. What do you drink and how much phe are you allowed? nBre

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