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

Avatar of Nikki

It’s so frustrating! We are going through the exact same thing with little Tuck Tuck. His levels stay so low, and then they try to up his phe intake by large amounts and he shoots up too high, and it takes a long time for them to get back to a normal range, and within a weeks time, they are back down to an extremely low level. When they have tried to go up little by little in the past couple tries, it hasn’t had much of a change, only when they overshoot. He does have CPKU. I was hoping so much that they were going to come back with different results, and tell me that he has mild PKU, but once again, I had false hopes, and big let-downs. It’s so emotionally draining to try to get him where he needs to be. Right now, the doctors are saying that he is just growing so fast that he is using up every bit of phe that he gets in him, so we are hoping for more stability once he slows down on his growth patterns. He’s still playing catch up from being a preemie. Was your little one a preemie? I don’t know if you told me that, but I don’t remember if you did. Let me know if you find out anything from your doctors about why this is happening and I will do the same, it’s nice to get feed back from someone else that is going through the same thing because I feel like we are drowning here, and poor Tucker is the one that suffers. I can always tell when his levels get too high when they overshoot with the phe because he gets this gym locker smell to him. I have actually started using baby cologne from johnsons and johnsons because I have had some smart… you know what person tell me that I need to give him a bath because he smells, and that was so hurtful I just took him and walked away because you cannot explain PKU to people that easily and after that comment I didn’t think that thry even deserved a reply. I actually walked away and started to cry. People don’t realize how the things that they say affect people. The lady at the grocery store today told me that his formula stinks also!! I apparently have bad luck with people being cordial lately. Or even being humane for that matter.
So, let me know will you please. Thank you, and BreaMarie is a good person to talk to. She is very nice and very knowledgeable when it comes to PKU; Very sweet girl. Hope everything goes better for you, and thank you for responding, it makes me feel like we are not alone because I have not seen anyone on here going through the same thing, and sometimes I feel like we are the only people struggling with this aspect of it. Talk to you later…
Nikki n(Tuck CPKU 3 months)

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