PKU.com Community Discussion Forum New to PKU.com pku and having chlidren

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  • #4990

    ok not sure i am doing this right but here goes i have a husband that has pku no else in his family has pku and he has other sibilings i know pku is a resscive gene that both parents have to carry i had never heard of pku till i meet him as far has i know know in me family has every had pku so my ?? is we want to have chlidren of our own soon just plan know though and i still have a fear that my chlid could have pku because his father would is it possible for me to harm a chlid i am carrying if the chlid had pku and i didnt know it ??? is there a way to test for it before hand this would be my first child he has one child that does not have pku from a pervious relationship and advice would be great because there is really no for my to talk to about this since his family acts like his pku does not exist if they dont talk about it they shut my concerns out so please help !!!! thanks

    #4991
    Avatar of Breanna
    BreaMarie91
    Member

    Hi My name’s Breanna and I’m 15 and have PKU like your husband, I have 5 sisters and brother and only one of them has PKU aswell (Erica does and she’s 8). The reason your husbands family probably doesn’t talk much about his PKU is probably the same reason that we don’t talk about it much in my family, it’s just become a part of life. Nobody in my family thinks of PKU as ‘weird’ or ‘unusual’ or anything like that anymore because they all have dealt with it for 15 years now.
    To answer one of your question I’m almost positive (but others can correct me if I’m wrong) that you would need to be a carrier of the PKU gene and carry it aswell (this doesn’t mean you actually have to have PKU, just be passing the gene on) and then if you do I think there is a 1/2 chance your child with have PKU. See your husband has PKU so he has all 4 recessive PKU genes, and he’ll pass 2 of those to your child which will make them a carrier, if you have 2 recessive PKU genes and 2 normal then you could either pass on 2 normal genes meaning your child would be just a carrier or 2 PKU genes meaning your child would have PKU, although since PKU occurs usually only in 1 out of every 15,000-20,000 babies born it is an unlikely hood that you’ll be a carrier, but you should beable to go to your doctor and they should beable to do a simple blood test on you to find out if you carry the gene. They did this on my brother after I was born and diagnosed with PKU because he was developmentally slow (he’s a year older then me) and they thought he might have had a missed case of PKU but it turned out he was just a carrier.
    To answer your next question I don’t believe there are any test that you can do during pregnancy to determine if your child has PKU because they have to wait a few days after birth to do the newborn screening (all babies get it to test for PKU and many other genetic disorders and it’s a heel prick and a few drops of blood). Anyway they have to wait a few days after the child is born so they can give the baby enough time for phenlalanie (that would be what your husband counts in his food, not sure how much you know about his PKU) but if the phenlalanie level comes back higher then normal then they have PKu if it’s normal then they don’t. If your child does have PKU they will not be harmed during pregnancy but will have to be put on a special diet that I’m sure your husband might be on unless he is off diet, which in that case it’s highly suggested he be back on before you do have a baby because it could case defects in the sperm if his levels are high.
    I hope this helped alittle and if you have other questions or if I didn’t make something clear enough just feel free to leave a message here. nBreanna

    #5155
    Avatar of Michelle
    mamanjake2
    Member

    I jus wanted to let you know that I am pku and I had a baby who does not have pku. From what I understand, the mother and father first both have to be carriers of the gene. Otherwise there is no possible way of having a baby with pku. But the baby will automatically carry that gene as his father does. You should be able to ask your dr to give you a test that will show if you are a gene carrier. If you are I am told that you will have a 1 in 4 chance of having a baby with pku. When you deliver there are a series of tests ran as soon as the baby is born. Testing for pku is one of them. You need to let your dr know that your husband is pku so that they will take an extra test or 2. That is very important because if they don’t detect it immediately then the child could suffer retardation. Also there may be special reasons under the circumstances of you needing to have extra testing during pregnancy to check the development of the baby. That would then qualify you as a high risk pregnancy. Hope this helps! Michelle

    #5156
    Avatar of Breanna
    BreaMarie91
    Member

    These are the chances that I’ve gotten from both my biology teacher (smart guy might I add) and my dietian and I also did what is called a punnett chart (just a chart to help you figure out the chances) and these are the chances I received:
    2 non carrier parents would have 0 chances of having a PKU child
    1 non carrier and 1 carrier would have 0 chances of having a PKU child but 1/4 chance that your child will be a carrier aswell (this is the only one I’m not positive about)
    2 carrier parents would have 1/4 chance of having a pku child and 1/4 chance of having just a carrier and 1/2 of having a non carrier child
    1 carrier and 1 PKU parent would have a 1/2 chance of having PKU children and any children without pku will automatically be a carrier (since the PKU parent can only pass on the PKU gene the carrier parent can pass one 2 things, either a non PKU gene or a PKU gene)
    And finally 2 PKU parents would have all PKU children
    Last time I checked those are the chances, so if you do go to your doctor to see if your a carrier you can know your chances. If your a carrier then 1/2 of your children will have PKU and if your not then non of your children will be (but no matter what all your non PKU children will atleast be carriers of the gene since all your husband can pass on is a PKU gene…since that’s all he has).

    #5157
    Avatar of Breanna
    BreaMarie91
    Member

    Oh I forgot one n1 non carrier parent and a PKU parent would have no PKU children but all would be carriers

    #5158
    Avatar of Justine
    jinglis
    Member

    Hi There! I have PKU too and live in Australia.I dont talk to my family about it so I’d love to talk to someone about PKU, children and the difficulties of going back on to the diet! I am 36 and been on and off diet all my life..i am also a registered nurse. Would love to here from anyone for a chat sometime

    #5164
    Avatar of Breanna
    BreaMarie91
    Member

    Hi, I’m 15 and have CPKU aswell along with my 8 year old sister, We’re ‘PKU-Buddies’ as she would put it. I also have a brother (he’s 17) and 4 sisters (18, 12, 9 and 5) without PKU. I don’t really talk to many people in my family about my PKU besides my mom and my ‘PKU-Buddy.’ If someone brings it up I’m more then happy to talk about it but I don’t really bring it up to like my siblings because my 9 and 5 year old sisters don’t understand much of it (they know what PKU is but it just doesn’t interest them). Plus, my 12 year old sister and I don’t exactly get along alot, she’s a cloth stealer, she steals my cloth lol! I’ll admit me and her have some sibiling rivalry and as for my older brother and older sister…well whenever I bring it up they automatically turn it into that I’m whining about PKU. It could be something so simple as me asking them if they could get my formula out of the fridge and they’ll be like ‘you know it’s not that hard to do, you make it seem like it’s hard to get it out of the fridge.’ And then they go on a rampage and turn it into that I was sayign that to complain about PKu instead of thinking maybe I just didn’t want to get up. Then my dad, well simply put he’s not the serious type, he goofs off alot and is a nutball (but he’s my nutball! ) nAlot of my friends know about my PKU and most of them are really interested and helpful, but I didn’t start telling them until last year when I started highschool. Before that I was really shut down about my PKU. nBreanna

    #5338
    Avatar of Teresa
    teresa66
    Member

    My daughter-in-law has pku and i never knew anything about it until i met her! She just recently found out that she was preganet and she was on the patch! So we immediatley took her to the doctor and they told her that the baby was probaly already damaged and that she neeeded to abort the baby! they said the baby would be born 90% profoundly mental retarded and all this other stuff well why dont people know about this stuff? We believe in god and that the 10% is gods so if anyone prays please pray for this baby and our family we really need your prayers! I think that people should be more aware of pku, because it really changes your entire life! Thanks!

    #5339
    Avatar of Breanna
    BreaMarie91
    Member

    Teresa- nHow far along was your daughter in law when she found out she was pregnant? Because depending on how long it took her to get her diet will determine what the outcome of her baby will be. I know of one women who was told because she was off diet for the first month of her pregnancy her baby would have major problems. Two years later and her little girl is a beautiful bouncing baby and has nothing wrong. Just keep faith and there is always chances that things could be better then you expected. I know how important it is to be on the PKU diet and have your blood levels where they need to be when your pregnant because even though I’m only 15 my dietian has began emphasizing how important that will be when I decide to become pregnant.
    I’m praying and hoping that everything will turn out alright in the end please email me if you want at completeangel@ameritech.net and I’d be happy to talk to you more.
    Breanna n15 w/CPKU

    #5378
    Avatar of connor
    connor05
    Member

    hi,im all new to all this i have a son who has just turned 6 he has pku, but either of me or my partner have pku,then both of my sisters were born with pku,so i must of inherited the gene,as there is no pku in my partners family at all it all all so confusing,but i was completley aware of what to do as growing up with it makes you aware,is any1 else in the same situation xx

    #5379
    Avatar of connor
    connor05
    Member

    also has anyone herd that it is possible to come of your diet when you get older,as we got advised in sheffield by the specialist that he could when he is older?? and my son does have the classical full blown pku, im vicky by the way!!! xx

    #5382
    Avatar of Breanna
    BreaMarie91
    Member

    So your sisters and son have PKU? Well if your son has PKU that would mean that you and your partner would have to be what are called carriers (if your sisters have PKU then your parents would be this aswell). It just means that you both have a PKU gene, but you wouldn’t have PKU because you have to have 2 PKU genes to actually have PKU, which would be what your sisters and son would have.
    Hope this helps you understand alittle bit more!
    If you have any questions at all feel free to message me here.

    #5390
    Avatar of connor
    connor05
    Member

    hiya,so if im correct my son would definatley be a carrier,but he would have to meet some1 later on in life that carried the geene to have a child with pku,it did feel confusing at 1st but it all makes sence as my parents were there to help as they went through it with my sisters,xxxx

    #5491
    Avatar of Amy
    Amy1781
    Member

    Hi there, I am new to this website. I also have a husband with PKU. We have a four year old son who does not have PKU.

    #6103
    Avatar of Meaghan
    mayrogers13
    Member

    Hey,
    Im Meaghan, 18, and have CPKU. I am the same way as your husband. I am the only one ever in my family tree to have PKU. My mother is “normal” and ate all the foods she normally would while she was pregnant with me and I turned out great. The only deterement that would be done was if you had PKU and were pregnant and you didnt stay on the diet. since that is not the case you have nothing to worry about. If you want to see if your child can even possibly have PKU there is a blood test that you could take to see if you hve the gene. Your husband and you would have to getblood takena nd they compare your genes to his and they will let you know if it is possible.
    Meaghan n18 college CPKU

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