Community Discussion Forum That’s PKU life! Too Low?!?! Reply To: Too Low?!?!


I have heard that many people find they can tolerate more phe than they thought.  This happened with my son when we were preparing for his Kuvan trial.  We were happy that his levels were always good at the amount of phe he was taking, so it would have never occured to us to ask his dietitian if we could see how much he could actually tolerate.  We have always been told that the more natuarl protein you can tolerate the better it is for your body and brain, so I feel this is a good thing for you!

Best Wishes.

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