Community Discussion Forum New to anyone with pku babies Reply To: anyone with pku babies

Avatar of alina
Member 5 months son has hyperphenylalaninemia.we decided to hide this to our families…his values are smalls(the avvarage is 2.10mg/dl),so, for now he can eat everything(I started to give him food just the last week)HE makes the guthrie test twice of week…
but i’m so affraid that the values go up when he starts with meat…I need to talk to someone…my husband doesn’t want to talk about it…the doctor says that is almost imposiblle for him to arrive at the diet…but ALMOST is the word that i’m worried about…HELP

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