Community Discussion Forum Parent support not alone Reply To: not alone

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First off I have to say your daughter sounds similar to my son. His levels never got over a 7 and they had to screen him 3 times in 6 weeks to see them get that high. I breast fed my son until he was 8mnths old but then started on foods and such so we decided to switch to formula to get a more accurate measurement of the phe he was getting. My son is a hyperphe and up until Kuvan got 500-550mg a day of phe but still had to be on diet. After awhile of measuring we could come up with a pretty good guess of how much something weighed by sight. My son grew to love fruits and veggies, didn’t really eat a lot of pasta or breads or the low pro foods for that matter. But absolutely no meat. Now with Kuvan he can have much more phe (1800 so far) but still its not enough to eat what the rest could normally and to be quite honest he still doesn’t like most normal foods. He would much rather have fruits and potatoes any day.

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