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

#6175
Avatar of Breanna
BreaMarie91
Member

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

Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional