Community Discussion Forum New to new granddaughter

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    Avatar of mona

    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

    Avatar of Breanna

    Lack of weight gain isn’t a symptom of untreated PKU from what I know. Here are some sypmtoms of untreated PKU:
    lack of energy
    lack of concentration
    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!
    16 CPKU

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