Community Discussion Forum New to Trying to determine if my child has PKU

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  • #7080
    Avatar of CORY

    I have a nine month old whose infant screens came back normal. Since about 3 months, he has had significant body odor, excema, and reactions to some foods. The doctors having been throwing around terms like “PKU,” “bone scans to determine if his bones think they are older then they are, and early onset puberty. I have been trying to determine what kinds of things are characteristic of PKU? We go to Childrens Hospital in STL on Wed and the are going to re-screen. Apparently, PKU is sometimes missed in the newborn screens. Does anyone have any ideas?

    Avatar of Breanna

    If PKU isn’t diagnosed by 9 months the baby would have serious problems. Eczema and body odor are two symptoms. Also, chances are he would be very far behind developmentally and possible have seizures. I’ve talked to some people who were late diagnosed as infants and they said their parents told them that they seemed very ‘out of it’ and they didn’t seem to focus on toys, people etc infront of them.
    I’m really not sure what else to tell you. If you have any other questions please feel free to ask. I’m not sure if I will beable to help but I’ll try and there are plenty of others here who will help aswell. nBre 16 CPKU

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