PKU.com Community Discussion Forum New to PKU.com NEED SOME HELP WITH UNDERSTANDING Reply To: NEED SOME HELP WITH UNDERSTANDING

#6650
Avatar of Breanna
BreaMarie91
Member

Hey, I think it is absolutely wonderful that you want to help your friend out! Basically Caite will have to remain on a special low protein (more specifically low phenylalanine) diet for the rest of her life, drink a specail metabolic formula to get nutrients she is missing because she isn’t getting a lot of protein and do regular blood tests to monitor the amount of phe in her blood…I hope that made some sense! That was just my very quick way to describe PKU. Then again who knows, there are drugs coming out that might hopefully liberalize the diet and allow Caite and other people with PKU to be on a more relaxed diet. Things change every year (for the better of course).
Your friends baby will be perfectly fine! Like Sarah said, Easton is perfectly fine and I have PKU as well and I’m doing great to! I guess the most you can do is be there for her when she needs it! I was my mothers third child and her first with PKU. She has always told me it was hard for her to teach my older sister and brother about my PKU when she was learning at the same time. Maybe you could show her this website so that she could get involved her as well. nBre 16 CPKU

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