Community Discussion Forum New to new member, PKU carrier.

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    Avatar of Elizabeth

    Im 23 year old female and I am a carrier of PKU, inherited from my father. I dont know much about it, except i must avoid having the artifical sweetner – aspartame, otherwise it could lead to brain damage. (it’s in so much food and drink which doesnt help – particular diet products!!!!)
    looking on this site it just talks about people who have PKU, but i am wondering is it possible to develop PKU if i have too much aspartame?
    Another concern is, I have been told that before i have children i have to get my partner tested to see if he is a carrier. if so then we would have a child who has PKU? Does anyone know anything about this test?
    Any advice would be great. n nLiz nUK

    Avatar of Andolyn

    Lizzy i have never heard of anyone developing
    pku from nutrasweet.
    I am not a professional but i have had pku for along
    time and know alot of folks with it . it is just one of
    those things you are born with or not .

    Avatar of Breanna

    Hi, My younger then you and not a professional so I’m not sure how accurate this will be (I have PKU so I’m hoping pretty accurate). Last time I checked if you do have a child with another carrier then there is a 1/4 chance your child will have PKU. And about the sweetener I don’t think you can develop anything from that if your just a carrier. nBreanna Hardy

    Avatar of Bethany

    I have three kids, one with PKU. He’s four months old so I’ve been asking alot of questions about this lately. I was told that my kids that do not have PKU have a 50% chance of being carriers and 25% chance of having nothing. Our doctor told us that the chances of our kids getting with someone else who was a carrier was very small, and even if they did, their chances of havinfg a PKU baby were still only one in four, that wouldn’t change.
    As far as the aspartame, if your body processes it fine now, which it does, it will continue to do so. It is a condition that you are born with from your genes.
    Good luck with everything!

    Avatar of karan

    Hi, I’m new here too. I have PKU and have a brother who has PKU. I’ve never heard of someone who is a carrier having to avoid artificial sweeteners and such. I have too because I have PKU. I have 2 sisters and a brother who are carriers and they basically eat whatever they want and drink whatever they want. As far as brain damage and such, this will happen to someone who has PKU who isn’t on a PHE restricted diet, as high levels of PHE will damage your brain if you aren’t on the diet. I really don’t think you have to worry. As for having a child with PKU, I wouldn’t worry too much. Of all the things your child could inherit from you and the father I’d say PKU is the least of your problems. GO FOR IT!!!

    Avatar of Breanna

    I agree with Karan, there is a very little chance that your partner will be a carrier and even if he is then you’ll only have a 25% chance of having a PKU child. Even if you do have a PKU child it won’t be the end of the world, there are alot of successful people out there with PKU. nBreanna

    Avatar of Keisha

    Hi Lizzy nMy husband and i are both carriers of the pku gene, our 6 year old son has pku but we have never been told that we need a special diet ourselves. it is impossible to catch pku unless you were born with it. just wondering how you found out you are a carrier? are you related to someone with pku?
    have you ever been on the pku diet? it just seems strange that you have been avoiding sweeteners and stuff who told you that you have to avoid these sweetrners?

    Avatar of Breanna

    I know that when I was born my brother had the typical look of a PKU kid (blonde hair, blue eyes and pale skin). He was also alittle developmentally slow and at 17months, when I was born, he wasn’t walking. So they had him tested thinking he might have been a missed case of PKU. He didn’t have PKU and him not walking was just how he was but we did find out that he is a carrier. nBreanna n15 w/CPKU

    Avatar of Elizabeth

    Been a long time replying

    In response to Keisha:

    My grandparents (father's side) were both carriers of PKU and it was not until my grandfather died that I found out that my father had an older brother who has PKU (my dad and auntie do not). He was put into care when he was 3 years old as my grandmother could not cope (they did not have much knowledge about it in the 50's I believe). 

    When my parents decided to start a family they went for tests and Guy's Hospital London to check that my mum was not a carrier (which she wasnt). 

    Mum has always told me that I am a carrier as it is inherited from my father and that I should not have aspartame in my diet.   Am I wrong in thinking this then???


    Avatar of Breanna


    If your your father is a carrier this means he has one normal gene and one PKU gene. You have to have two PKU genes in order to have PKU, one from mom and one from dad. Because your mom is not a carrier, she obviously has two normal genes and therefore all she could have given you was a normal gene. Your father could have given you a normal gene, or a PKU gene, so you have a 50% chance of being a PKU carrier.

    Even if you are a carrier you do not have to worry about not eating asparteme. Those who have PKU lack an enzyme that breaks down an amino acid called phenylalanine, and they cannot break down phenylalanine. Phenylalanine is found in protein and asparteme, which is why those who actually have PKU must avoid asparteme and watch how much protein they eat. Carriers DO have the enzyme that breaks down phenylalanine. They DO NOT have to avoid protein or asparteme, because they do not actually have PKU, and their bodies break phenylalanine down normally.

    You might be a carrier, then again you might not be. You should be fine consuming asparteme.

    ~Breanna Hardy 18 CPKU

    Avatar of Michael

    Hello Everyone,

      I have a daughter with C. PKU. I'm looking for some of the Assorted Bunny Pops and Chocolate flavored Bunny that you would have order off of Maddy's. I did not have time to get some for my daughter before they sold out. I will pay for them if you have some you would like to give up.

Viewing 11 posts - 1 through 11 (of 11 total)
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