PKU.com Community Discussion Forum That’s PKU life! How do you keep your level down? Reply To: How do you keep your level down?

#7957
Avatar of Gordon
KentuckyBoy
Member

Just wondering your daily exprience with the diet and taking Kuvan. I take 15 tabs of Kuvan daily of a morning. Monday,Tues.,Wens, I write down every thing I put in my mouth and document the amount of phes in each food. When done, when I go to bed I should have eaten around 1250 phes. On Thurs.morning I take my blood and send it to the clinic at University of Kentucky along with my log of foods eaten three days prior. I usally hear back from my blood with an email from the diatician within 5-7 days.Even on Fri,Sat. and Sun. I keep track of ny phes on a piece of paper. I also drink the 20 PKU coolers from Vitiflo. I drink 3 of these a day.The only difficulty I am having is eating 1250 phes a day. I get so full. I am not in the habit of eating this much food. But I know it is important to eat this amount to find the cut off amount of phes my body can tolerate daily. Taking the Kuvan has been wonderful because it has allowed me to eat things I have never eaten but it has been alot more difficult than I thought it would be.What about you?Lets hear your experience.

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