Community Discussion Forum Adults and PKU Maternal PKU

Viewing 15 posts - 1 through 15 (of 33 total)
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  • #5974
    Avatar of Claire

    I thought i would start a new topic about maternal pku so we can chat about our experiences with it.
    I am preconception diet at moment and have had my levels down to between 150 and 250 since March. I found it hard at first but know its becoming second nature to me and it is getting easier.
    I do my levels once a week at moment and will have to do them twice a week or more once im pregnant. My dietician’s are a great help at the moment.
    Anyhow i would love to hear about anyone in the same position or anyone who has had any experience of maternal pku.

    Avatar of Charlotte

    Hi there
    I am 35 years old with pku…diagnosed at birth and treated.
    I have 4 children, all of which are fine health wise and mentally wise! I went back on diet with all pregnancies. It was hard but worth it!

    Avatar of Claire

    hi there,
    its great to hear that you have four children all healthy.
    i found diet hard first but ok now my levels are usually good were bit low last week but just means i can have more food now

    Avatar of amanda

    PINKLADY? I was curious.. how soon did you start your diet back up? I heard it should be atleast 3 months in advance to getting pregnant, but can you start it one you find out?

    Avatar of amanda

    hi all can any one tell me how long did it take to get your blood levels down before u could try for a baby? cos i been married a year and we would love to start a famliy now.hope some one can give me some advice please. thanks amanda

    Avatar of Orla

    Hi Amanda,
    I was told that I will have to keep my blood levels low for the first three months if they stay regular for those three months then my husband and I can start trying for a baby. My first two levels were 100 and 250 so they are very happy with those. I take my blood once and week and if we are lucky enought to get pregnant then I will have to take my blood twice a week. nWould love to hear from you and let me know how you are getting on.

    Avatar of Danielle

    Hi Everyone,
    I’m 23 and was diagnosed with moderate pku at birth. I was on the pku diet until about age 14. Gradually, my doctors seemed to be less and less concerned with my phe level. They said that by the time I was an adult I wouldn’t have to worry about pku, only if I were to become pregnant. As a child I struggled a bit in school, but that could be blamed on my other health problems and the fact that my dad moved us around so much. Once we settled down and I was healthy, my grades went up and everything seemed fine. Currently, my IQ is 126, which is pretty normal.
    After many years being off the diet, I’m trying to get back on, mainly because I think I’m pregnant. It’s really hard and I’m constantly worrying about what I eat and if I’m going to hurt the baby. I’ve seen a dietitian and I’m trying to find and order formula and lo pro food.
    I have a couple questions for orlan65, pinklady and any other mothers with pku:
    What are/were your diets and lifestyles like during pregnancy? nDo you have any advice for me?

    Avatar of ANGELA

    its really good for me to hear about preggos whove had kids while pku. i really want kids someday, it won’t be soon but i am 25 now and when i was 15 the doc explained it all to me, like being on low levels before conceiving and stuff but what i wondered most about is, can we breastfeed?
    like i said it wont be an issue anytime soon but i am curious. the doc said at the time yeah i think but that was 10yrs ago i can’t remember…..
    its nice to know it’s possible, hard but possible…

    Avatar of Breanna

    I’ve heard of plenty of moms who have PKU and breastfed. I’m not sure if they had to keep their levels down while doing that, I don’t think so, but I know they did it and their kiddos are fine! nBre

    Avatar of Alicia

    Hey everyone, I just thought I would tell everyone that I am pregnant with my first child and its tuff. So anyone who wants to get pregnant good luck. Have a lot of discipline for drinking the supplements. That is the best advice I can give anyone.

    Avatar of Tiffany

    I am new to this website, but I am currently trying to get pregnant. My husband and I have been married just over 1 year and we’re very anxious to have a family. I got the okay from my doctors just over a month ago. I always thought that getting my levels down was practically impossible. It’s not and I didn’t realize that until I joined a maternal PKU support group on Yahoo. They are a wonderful group of ladies who are either trying to get their levels down, trying to have their first baby, trying to have additional children, or have children and offer much needed, helpful advice. Keeping my levels down has become like second nature to me. If anyone needs any advice on how to keep them down, I have some helpful hints that may help. Everyone is different so I will help as much as I can. P.S. I am waiting to get my profile approved

    Avatar of Sells

    See guys…the problem I have is this. I want to get my levels down to where they need to be to have a child, but my husband and I cannot afford low protein food. The only thing I have is noodles and snack food. Not much except for making spagetti 200 different ways :-) It’s really a struggle for me because I really want to get the levels down but I get frusterated feeling like I cannot do it without low protein food. Does anyone have any advice as how to go about this in a better way than I am?

    Avatar of Alicia

    This is for Abbey, I am currently 19 weeks pregnant. I was also having the same problem as you. I have a recipe book for PKU and its all regular food except for pastas. It has a lot of recipes for veggies and breads and pastas. Anyway it is called apples to zucchini a collection of favorite low protein recipes by Virginia Schuett and Dorothy Corry. I was suggest trying to get that book. It has helped me however i do get low protein foods through my insurance as well. Try that though let me know how it goes.


    I am a 45 yr old woman late-diagnosed PKU. I have 4 children adversely affected by my PKU. They have multiple developmental disabilities, including mild-moderate-severe mental retardation. I was not diagnosed with PKU until I was 4 1/2 yrs old- at which time I was hospitalized in the Los Angeles Children’s Hospital in West Hollywood, California. I was put on the restrictive diet at that time. I was only on-diet for a year before they took me off again. They told my parents they didn’t understand why I was’nt severely mentally retarded, but they predicted I would be by grade-school. They advised my parents to have me “sterilized” and institutionalized. Fortunately for me, they didn’t take that advice. Well, that’s all for now.

    Avatar of

    kilowattgirl. that just makes me so mad that they would put u through that when managing pku can be failry easy when u get started right. i dotn understand why they would take u off the diet, its like they gave up on you and that just makes me mad!!!!! im gald that everything turned out diffrent though!!!! sometimes doctors make me so mad!!either cause they are ignort or just plain dumb. atlot of doctors here dont know what PKU is and i have to go to vancover for treatment and even though its a commuit i really appreciate it as i get really good care and have a hole team of doctors. of course it wasent always like this, i struggled anormasly with my pku all trhough my school years and only with in the last 2 have a changed my life and healh around. now i try to do all that i can for spreading awarness for pku and i learn new things everyday. i have a pku website and im trying to publish a pku recpie book also im organizing the very first canadain pku walk a thon. id love to talk to u further if u like. i love talking to new people , u never know what u can learn and the friends u can make!!
    well gtg im at work!!!
    hope to talk to u again!
    god bless u and ur family!

Viewing 15 posts - 1 through 15 (of 33 total)
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