Community Discussion Forum That’s PKU life! just abit confused … Reply To: just abit confused …

Avatar of Apostolia

One of the first things I remember is me saying: they got the wrong diagnosis, my daughter is fine with all the regular formula she's drinking  (every meal 4 reg/1 pku)…. idon't know why it happens. maybe it has to do with their metabolism as they grow up so fast at this age… But I ;m sure everything is fine. DO not be scared with levels like that, since here in Greece, and from what I know in Germany to, accepted levels are >1.2, that would be your 80…. Our doctor was strict, so my  daughter during the first year was always between 1.2-2..( multiply with 60 for your levels). And she's now at the 95th percentile of hight, 80th of weight. She grew up fine and so will be your son.

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