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Hey Ruth,
I’m glad to hear your daughter is doing so well! You mentioned that her hands sometimes seem shaky, are they shaking a lot? My doctor told me that everyone has a ‘natural tremor’ meaning that everyones hands shake a little bit, some more then others. I’m sure it is nothing, but maybe that would be something to ask at your daughters next appointment.
As for Kuvan, I do have Classical PKU and I am on Kuvan (I have been for over a year now). I was told that I probably wouldn’t respond because I have Classical PKU, but considering my tolerance went from 300 mg of phe (20 exchanges) to 1000 mg of phe (66 exchanges) I would say I definitely responded. Check out this thread, or just ask me, if you want to know more: nBreanna

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