Community Discussion Forum Adults and PKU Looking for Support… Reply To: Looking for Support…

Avatar of christine

I can undersand needing support.  It's a weird thing having PKU that a lot of people don't fully get.  I've been on the diet more or less my whole life.  At times, I'm a bit more liberal but always within a certain range.  I've never had meat, fish etc.  I just don't have any desire.  Recently, I've been more strict about being on my diet and making sure I have good levels.  Two things I would tell you to look into from my perspective.  First, try Lophlex as a formula.  I ALWAYS hated formula.  It was my one vice.  I could deal with not eating but the formula was the worst.  Lophlex is a pre-packaged formula kind of like a Capri Sun juice.  It is a lot easier to drink and tastes a lot better than many of the other formulas.  The tropical flavor actually tastes likes juice.  I don't like the berry but these are just personal preferences.  Definitely try it at least.  It makes life a lot easier. Second, see if you are a candidate for Kuvan which is pills that let you manage your diet a lot better.  I'm allowed around 15 grams a day and I've had really great levels.  Hope this helps. 

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