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

Avatar of Monika

Its exactly the same way for Matthew he is going to be almost 4 months old and his levels have been at 0.2 for almost the entire time.. he jumped up to 12 just once..and just like you said it took awhile to get them back down and then once they were down then we are back to square one..Right now we are increasing his phe by 25mg and when we get back a low result we dont automatically increase again instead we wait to get back a couple levels..Doctors think hes just slower in responding to his phe intake..But for now they are still really low..Im getting the same talk as you about how hes growing and hes basically using it all..I believe it to an extent because why is it that all the other children with PKU at his age can stay within range?….How old is your son cause i mean im new to all this and honestly i wouldnt worry so much..everyday when i see him laughing and smiling and eating what he should then i know im doing the right thing..Besides im just glad they are low and not high..Please dont let people get to you with their comments because you have a beautiful and perfectly healthy fact our boys will only be healthier because of all the doctors and dieticians that are here for them. Honestly now that i have met someone who is experiencing the same exact thing it just lets me know that both of us will be ok cause we can share eachothers stories and help eachother out. This way maybe we will finally find a way to get our boys in range

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