PKU.com Community Discussion Forum New to PKU.com new granddaughter

Viewing 2 posts - 1 through 2 (of 2 total)
  • Author
    Posts
  • #6204
    Avatar of mona
    heavenly
    Member

    New grandaughter isnt gaining weight they are questioning possible pku or cyctic fibrosis?? need to know more about pku? what are the symtoms in infants? help

    #6206
    Avatar of Breanna
    BreaMarie91
    Member

    Lack of weight gain isn’t a symptom of untreated PKU from what I know. Here are some sypmtoms of untreated PKU:
    vomitting
    headaches
    tremors/shakes
    lack of energy
    lack of concentration
    irritability
    siezures
    and eventually mental retardation

    If she does end of having PKU and is treated (low protein diet, metabolic formula and regular blood tests) then she will live a happy and normal life. The only symptom that people with PKU have if they are treated is that they usually have a lighter complextion then their siblings. Which usually, but not always, means blue eyes, blonde hair and very light skin.

    If you and her parents think she has PKU I would suggest getting the Newborn screening test redone on her. The first time it would have been done (shortly after birth) they might have done it to early to let Phenylalanine accumulate in the blood. I hope everything gets figured out!
    Breanna
    16 CPKU

Viewing 2 posts - 1 through 2 (of 2 total)
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