PKU.com Community Discussion Forum Adults and PKU Autism and Pku

Viewing 15 posts - 1 through 15 (of 19 total)
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  • #5341
    Avatar of Celina
    c mc donnell
    Member

    Hi my name is celina, i was reading an article recently where it said that a child that has PKU could have autistic symtoms. Has anyone hard this before or know anything about it.

    #5353
    Avatar of Breanna
    BreaMarie91
    Member

    I know this is probably a silly question, but what would autistic symptoms be? I’ve heard of autism but never queit understood fully what it was. Thanks! nBreanna

    #5369
    Avatar of Celina
    c mc donnell
    Member

    Hi Breanna children with autism tend to not communicate very well, play on their own cannot share toys or cannot play with other children. They often have learning difficulties and may be able to repeat words but may not understand their meanings.
    I have read your profile Breanna and i think it is great that you reply and give so many people advise and share your experiences with others. I know it is of great comfort when someone replies and shows an interest in what u have to say nThank you.

    #5374
    Avatar of Breanna
    BreaMarie91
    Member

    Thanks Celina
    Anyway, from what I know neither me or my sister really had problems with playing with others or anything like that. I grew up with 6 siblings (me and Erica are the only ones with PKU)and so I always played with all of them and alot of my cousins. And because I’m an (almost) A student I’m pretty sure I don’t have any learning problems, but it could be just me I’m not sure if any others have issues like this. nBreanna

    #5437
    Avatar of
    Anonymous

    HI THIS IS BETHANN AND YES THERE IS SOME PKU PEOPLE WITH AUTISM MY BROTHER GARY HAS IT AND ADHD AND SO DOSE ME AND MY OTHER BROTHER HAS ADHD GARY IS THE ONLY ONE WITH AUTISM.

    #5503
    Avatar of Celina
    c mc donnell
    Member

    Hi Bethann That is interesting i have never met anyone with pku that has Autism also. You said that he has Adhd is that something that is also connected to PKU. I have read your profile and you have said that u are a consultant for Pku. Can u tell me in what way. It sounds like something i would be interested in. Thanks

    #6293
    Avatar of Momofadyangel
    Momofadyangel
    Participant

    Good Question. We thought one of our daughter might be a PKUer since the other one was. But the phenylalanine test came back normal. So I have an austic chlid without the PKU, and a PKU without the austim. oh and a child without the austim and the PKU. All from the same family

    #6300
    Avatar of Cadnum
    jabberwocky
    Member

    How is it proven that the autistic symptoms are connected to the PKU?

    #6302
    Avatar of Breanna
    BreaMarie91
    Member

    I don’t know how it is proven. Actually I don’t even know if it’s true. Maybe if the person had untreated PKU it could potentially be possible. But as far as I know I’ve never spoken to/meet other people with PKU who had autistic symptoms.

    #6303
    Avatar of Momofadyangel
    Momofadyangel
    Participant

    Since I have an austic child, I can answer some of the questions. The austim specturm is so large that there is alot of charaterics.The main ones in my daughter are developmentally delay in speech and language, muscle control. No control of body funtions(mostly restroom type), she walks on her tippy-toes.Shyness. Rountine is a big one. A sight change in her rountine really rocks the boat.She can’t rebound alike a normal person would so it takes longer to reset the reset button. People think we have no control over her. She has people and bug phobia, she freaks out in given time. She only trust a handful of people. Basically I’m prisoner in my own home if I don’t want deal with her freaking out without notice and the unwanted attention from other people. Also she does not look her age.
    Now Addy the one with PKU is the total opposite of Emmy. There is research going about protein mutions and austim. I asked our genetist about it. She is looking into it. Emmy is going to have genetic mapping done to give us more answers about her. nBrandi

    #6304
    Avatar of Momofadyangel
    Momofadyangel
    Participant

    I have alot of things speeding around in my head. Emmy also has a very hard time communicating. I often have to decode. Like “me do” = I need help.My pointing (tummy or eyes)hurts.= I’m hungary or tired.
    I don’t think untreated PKU can lead to austim. Now untreated PKU can lead to mental retardation. Two different things. Austim can be treated with alot of therphy while mental retardation can’t. Some austic people are very smart.Dr. Temple Gradin is austic, She sets up feedlots for different companies, one of them being McDonalds. She teachs and heads the Animal Science Department at Colorado State University.

    #6310
    Avatar of Breanna
    BreaMarie91
    Member

    Brandi thanks for the info!!!

    #6543
    Avatar of Kathleen
    Kathleen
    Member

    Hi, I am a 30 year old with Classic PKU, and I was diagnosed at birth. My diet was controlled in my childhood, but isn’t really now…..however, I did have mild autistic/Asperger’s symptoms as a child. I would bang my head on the wall (proprioceptive input), had very poor social skills, slight echolalia (repeating of other’s words), walked on my toes as an older child, and I still continue to be visually/auditorially defensive. Despite these problems, I could read a magazine article at the age of three, so more than likely, more Asperger-like symptoms. I don’t know whether these were related to pku, because at the time, I believe my levels were fine, and oddly, these things have disappeared for the most part. I am an Occupational Therapy major so I know quite a bit about autism and find it absolutely fascinating.

    #6544
    Avatar of Kathleen
    Kathleen
    Member

    Whoa, to the person who posted up a few from me — autism cannot be cured with therapy. Autism is a lifelong disorder, just as PKU is. Autism can be helped through therapy, but never cured. The medical world is not even sure why it happens yet, so it’s definitely not curable.

    #6547
    Avatar of Kathleen
    Kathleen
    Member

    Sorry, I misread that post. You said treated, not cured. I apologize.

Viewing 15 posts - 1 through 15 (of 19 total)
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