Community Discussion Forum New to NEW TO PKU Reply To: NEW TO PKU

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I’m glad to hear that his levels are staying down. Is your son drinking the unflavored Phenex? I was just curious because my little sister drinks Phenex II unflavored.
I have heard of some pills that they are allowing people with PKU to take that would allow them to eat more phe. I think some are called Kuvan, Phebloc or Neophe, but I’m not sure. I personally have not been asked if I want to try this, but even if I do get asked I don’t think I will want to try this. I personally don’t think I want to try this because I was told that it doesn’t work for everybody. I’m not sure if I want to experiment with my body like that. Plus, I’m doing fine with the diet so why bother messing around with things right? But this is just my thinking. nBreanna

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