Community Discussion Forum Parent support Low Levels in CPKU Preemies HELP PLEASE Reply To: Low Levels in CPKU Preemies HELP PLEASE

Avatar of Monika

i am so glad to find someone that understands what it feels like to never have your child in range..i keep track of how much he eats every day and each day he eats the required amount and yet his levels are still low..i thought it might be mild pku but once they increased his intake by like 100mg and his level shot up and then it took a week to get it back down and now we are back to square one cause we cant get them up again…its just soo frustrating cause i just want him to be ok..i really hope this dna test tells us something..ohh and im from about yourself? and after you had this test done did they say if your child had mild or 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