PKU.com Community Discussion Forum Parent support Anyone know about Kuvan? Reply To: Anyone know about Kuvan?

#7335
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cjqa2007
Member

I don’t even know what week we are on but with the kuvan we are now up to 650 and adding more phe. We are struggling to get that much in my son because the kid will live off of fruit and doesn’t really want anything else. We go in today for his check up to see what else is going on.
I know something was said about adding meat. Our dr is discouraging adding meat because meat is so high it really isn’t worth adding even a little and then getting used to it. We aren’t really adding much of anything, sometimes powdered milk to his phenex 2 since he doesn’t get the 650phe from the food he eats. Who would have ever thought that I would be having to find ways to add phe..lol

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