Community Discussion Forum Adults and PKU maternal pku

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

    hi i am 23 years old and i am getting to the age where i want to start a family but i dont really know much about pregnancy with pku. the only thing i know is it has to be monitored and i have read some stories where the girls had to eat like meat and stuff in thre last couple of months. i really need as much info as possible so anything would help me. also i know theres a camp for mothers to be if anyone has any info on that that would be great.

    Avatar of Claire

    You have to go on a really strict diet before you get pregnant if you have pku. Ur protein is very restricted and u must eat a lot of prescription foods like free pasta bread etc and take ur formula (more than usual) calories also have to be counted and u wud need to visit hospital that deals with ur pku regularly and send in bloods twice a week or more.
    Suppose best thing to do is get in touch with ur hospital or clinic and start from there.


    I am 20 years old and I became pregnant last Febuary and was due November 11 06′ I was not on a strict diet before getting pregnant, there for we lost the baby due to heart faliure, when I was 4 1/2 months along. The second I found out I did everything I could to be as healthy as I could be for the baby. My best advice to you that other doctors ect. have given me is to be sure to be on a your diet and your levels are under control, and when you are pregnant your levels do jump around alot due to all of the changes in your body. So blood test and more than regular doctor apt. are needed., nDanielle

    Avatar of Stephanie

    Hi I am a 35 year old mother with classic PKU and I have a 14 year old daughter name Kristen she is pku free. When I was pregnant I did not tell my DR. and I went my whole term almost with her she was born c-section I had lost all of my fluid around her so they took her at 39 weeks. Kristen is doing well but she has health problems from being born to a mother with pku.
    Kristen was very lucky when born my levels were 11 so for her 22 the dr. say levels 5 to 10 are ok . Kristen is mild mr, has a muscle not develop in her right hand and she was born with spinal stinois ( dont know if spelled right) of the neck so she can not get hit in the head or fall and hit her head or she will be in a wheelchair but on the other hand she will get older and and still have the same outcome. As she gets older she will be in a chair..
    If you would like to have a child there is alot to think about but I can say that even though she is special I love her very much and I will do what ever it takes to make her happy and to enjoy LIFE to me she is a blessing to everyone who know these special children who are born or who go to live with God..
    Good Luck I hope this helps I hope to hear from you

    Avatar of Emily

    hello, my name is Emily, I am 17 and I have classical PKU. I am pretty new to this website, but after reading all of these posts I think I have something that can help. Last year my mom (non-PKU) participated in something called the Resource Mom Program. It is a program that pairs PKU women who want to start families with moms of PKU kids (like my mom) to act as resources. These Resource Moms can help with things like getting back on the diet (if you were ever off of it) before getting pregnant, finding you low-phe foods, answering diet questions while pregnant, and other things like that. The philosophy here is that the Resource Moms know a lot about the new products and the diet-for-life philosophy that may be able to help. If you want any more information, consider talking to your doctor about it- she may know about it as well. Or I could see if my mom knows anything about the program this year. Good luck!

    Avatar of Karen
    Karen nawn

    [/COLOR][/SIZE][/FONT][FONT=Arial][SIZE=16][COLOR=purple]Hi All, I am new to the site and I am delighted to read that I am not alone. I would just like to tell you my story. I am just gone 32years and 9 months ago I had my first child, a baby girl (Amelie). For years I struggled with my diet, when myself and my husband decided to have a family we made an appointment straight away with the clinic and got the ball rolling. It was tough at the beginning as my exchanges had to down around 4 to achieve the phe levels I needed to concieve. When I did conceive I sent bloods twice a week to keep track. During the first trimester I suffered from really bad morning sickness to the extent that I could not even drink water. My levels went up to 800. [FONT=Arial][SIZE=16][COLOR=purple]I ended up in hospital for two weeks on a drip. As soon as the 12 weeks passed all was good. nThe second and third trimester was great as the baby grew the more protein I could eat. By the last week I was on 26 exchanges. I gave birth to a perfect baby girl weighing 7Lbs 8oz. IF I CAN DO IT ANYONE CAN!

    Avatar of amanda

    hi i am a 26 yr old pku mother with 3 wonderful boys. i have had high levels my whole life, even when i was pregnant. i am thankful that my kids are healthy. my kids have no problems except gaining weight. i have a 3,2,and 11mo old. because of my boys weight and my high blood levels that state has taken that against me and took my boys recently. thank goodness its just temp. i have to get my levels down and stay on my diet in order to get my boys back. if you are pregnant with high levels and even though there isnt anything seriously wrong the state will use your pku against you. its a struggle to go from what iknow to something different but ill do anything for my boys and to have them in my arms again.[/SIZE][/FONT]


    why would the state be so cruel and take away your kids when youre not on a diet?! Where is this?!

    Avatar of heather

    I have PKU and i now have 2 healthy children. one is 3 the other is 1. i hadn’t been on diet since i was 8 then i got pregnant registered myself into a high risk pre-natal clinic where they monitored me closely i also found myself a dietition which specializes in PKU. i went onto diet when i was about 5-6 weeks pregnant and yes by the end of my pregnancies my dietition told me that i needed to eat hamburgers and hotdogs to get some weight onto the babies……needless to say that i had my first baby early, by four weeks, my fluids were low. she was only 4 1/2 lbs at birth, and 18 inches long… she is getting ready to turn 4 she is 3 1/2 feet tall and weighs 35-38 lbs…after having her i fell off diet again. and did the same again. 6 weeks pregnant got back on diet again. my son was almost a week late. he was 71/2 lbs and 18-19 inches long……my drink of choice was maximum xp(orange flavored) and instead of counting phe’s i counted protien in-take and it worked… children do not have pku they just carry the gene, they are completely healthy…sent blood samples in every week.

    Avatar of Missy

    Hello everyone. I have been registered on this site for some time but so much was going on that I just forgot to even check it. I updated my profile just a little bit ago and added some pictures on there.
    I am Missy. I am 32 yrs old and classic PKU. I have never been off of diet so my experiences are a bit different from alot of you that have posted as you all have been off of diet.
    I am currently pregnant with my first child. We are having a little girl. My phe levels since before pregnancy has stayed pretty much between 2-4 mg/dl. The baby is doing great and developing according to schedule. I see a high risk obgyn not just cuz of being PKU but also because of my history of endometriosis which caused a miscarriage in 2003 (my levels were at 5 at that time so we know it wasn’t the PKU…. they did tests and found it was due to the endo), and also cuz of the history of type 2 diabetes on my dad’s side of the family. I don’t have diabetes but they watch me closely for gestational diabetes cuz of the family history. At my first appt. they did the glucose test (usually done at 28 weeks) as they wanted to be on the safe side cuz if I had it then I would have to take insulin injections cuz you can’t change the pku diet while pregnant. But thank god it came back normal. They will repeat the glucose test at my 28 week appt.
    Ewww, the baby right now is kicking the heck out of me lol. Very active little girl in there.
    I just wanted to introduce myself and say hello and if any of you would like to talk feel free to get ahold of me. I will be checking this site regularly.
    Missy Badalyan n32 CPKU nAkron, OH n26 weeks pregnant

    Avatar of Tracie

    Hi there,
    I am PKU just like everyone else.LOL
    I do have a healthy 10 yr. old girl.(NO PKU)

    I planned her to the day of almost conception.
    I went on diet 2 months before even trying to get pregnant.

    If your biological clock is ticking.LOL
    like mine was the formula ,and food was easy to deal with.

    I counted all my food intake daily.
    Blender full of formula.(Phenex 2,Mangos,ice,and 7-up)
    It was like a slushie.
    Its not easy with the formula,but when you see and feel the baby it just makes it worth it.

    I did go to a store called Walgreens.
    They have braclettes (terry cloth)
    that you wear on your wrists.It pushes against
    pressure points that take away morning sickness.

    Hopefully i helped a bit for you.

    Take care,

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