PKU.com Community Discussion Forum Adults and PKU New to PKU (sort of)

Viewing 4 posts - 1 through 4 (of 4 total)
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  • #5686

    PKU isn’t something that I have thought about in a very long time. My parents where informed of PKU when I was born. My levels where at 13 and stayed there. If you want to know my story, I’ll be putting it on the site as soon as it lets me. Because I haven’t thought about PKU in 8 years, I am sitting here wondering which way to turn. I have a 9 year old son who is having some issues in school, and I was informed of it possibly being genetic. How do I go about getting a Doctor to look at this without being looked at, as if crying wolf? I tried to have him watched for PKU until he was 1, but with every Doctor telling me there was nothing wrong. I put it out of my mind. I know I am a carrier, and was told when I wanted to have children I needed to see a gentisist. (?) I didn’t, so now what? Any answers would be of great help. Thanks in advance.

    #5688
    Avatar of Keisha
    kmariewood
    Member

    HI CINNAPEDEROSE
    IM HAVING A LITTLE BIT OF TROUBLE UNDERSTANDING IF YOU HAVE PKU OR YOUR JUST A CARRIER. IF YOU DO HAVE PKU WERE YOU ON DIET WHEN YOU WERE PREGNANT WITH YOUR SON? AND WAS HE TESTED FOR PKU AT BIRTH? WHERE DO YOU COME FROM? nKEISHA

    #5689
    Avatar of Breanna
    BreaMarie91
    Member

    I’m just going to drop by my two bits worth.
    From what I know if your son is 9 and has PKU but was never treated for it chances would be that he would have alot more then just trouble in school. Because not being on the diet at such a young age would affect his brain so much that he would probably be mentally retarded…so the chances of him having PKU is pretty unlikely.
    Breanna

    #5863
    Avatar of Meaghan
    mayrogers13
    Member

    If your sonw as tested for PKU by the doctors (as is required in the U.S, one of the foot pricking exams when a child is born) then there should be nothing wrong speaking in PKU terms. If you have PKU and were off your diet during the pregnancy there is a very good chance that it affected your child. I would say contact your doctor (a PKU doctor)

Viewing 4 posts - 1 through 4 (of 4 total)
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