Community Discussion Forum Parent support Levels out of range Reply To: Levels out of range

Avatar of Susan

It’s good to know that Lydia is not the only one this is happening to. It’s just very frustrating. She still has not had a reading within range, but after being so low, she shot up to 13.2 and then after 2 days of adjusted diet to bring down her level it was below 1! Then after giving her more milk to increase her level it’s still below 1, so we’re trying more milk. Maybe it is growth spurts I don’t know for sure and she’s my 1st with pku so it’s all new to me. But I guess all I can do is to follow the dietician’s orders and watch her grow. She’s sitting unsupported already!! nThanks everyone for your comments. nSusan

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