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

#7336
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BreaMarie91
Member

Hey, I’ve been on Kuvan since October. I went from 300 mg of phe to 1030, so I know how hard it is to have to find new ways to get all the food in. My doctor technically never discouraged meat, but only because before she could even bring the topic up I told her I never wanted to eat meat no matter how high my tolerance gets. Part of the reason is what your doctor said, we would be eating such a small amount of meat there would be no point. Plus I just don’t have any interest in eating meat.
After being on Kuvan for so long I still have a hard time getting all my phe in and at the end of the day I’m adding anywhere form 300-600 mg of phe through powdered milk. I guess since he has so much freedom right now maybe it would be best to just let him eat what he wants and then add the remaining phe by mixing powdered milk into his formula (as long as he’ll still drink it that way of course). That way you don’t have to push him to eat and as he gets older I’m sure he’ll see things he wants to try.
Just a word of advice for adding powdered milk, if your adding a lot of powdered milk you might not want to add it all to one cup of formula. Too much powdered milk starts to taste nasty (in my opinion) plus it can ‘spike’ phe levels. nHope this helps! nBre 17 CPKU

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