PKU.com Community Discussion Forum New to PKU.com Going back to the diet Reply To: Going back to the diet

#7203
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tara21379
Member

Hello Dan2Earth29. I am very much in the same situation as you. I am 29 and just went back to the doctor for the first time since I was in high school. In response to your question….have things changed….my reply: holy cow, yes they sure have! The doctor said to me that if there was ever a golden age of PKU, this is it right now. I grew up drinking Phenyl-Free, which was this disgusting-tasting, horrible smelling, thick drink that I couldn’t stand to have. Now, formula comes in many different forms (drinks, juice boxes, salad dressings, sorbet pops, bars, gels, it comes in tomato soup…etc.) and it keeps getting better. I have to say that some of the formulas don’t taste that bad anymore. There is a new pill out (Kuvan) that allows you have higher amounts of protein while maintaining a lower blood level (but only if it works for you…15% of people with classic PKU react favorably to the pill). They are also in the process of developing a shot, which would be taken once a week and might not even require a diet at all (however it is currently in the development stage and that is only a speculation)…but we are talking less than five years it could become a reality! I could go on….

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