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

#7452
Avatar of Nikki
TucksMommy
Member

I’m not sure whether his heart condition affects his PKU, we just found that because he was admitted for not eating and having a uti and upper resp. infection. When they did the chest x-ray they found it. It is all very troubling and frustrating, at least I know I’m not alone because that is how it feels with PKU- not too many people can understand. Thank you for responding, I am kind of desperate for some answers right now, and although his docs are great, I haven’t gotten them all and any parent knows that not having answers is devastating. Sorry for the negativity, just feel very alone with PKU…

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