PKU.com Community Discussion Forum Adults and PKU Any PKU moms to be out there?

Viewing 15 posts - 1 through 15 (of 23 total)
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  • #7305
    Avatar of
    Anonymous

    Im about to try for my second child. Im 24 – have PKU – and one son already, who is fine.
    Looking for othere mums to be to share advice and have a general moan about how extra hard it is for us PKU’ers xxx

    #7308

    Were you on your diet when you were pregnant with your son? My husband and I want to start a family but he told me to get back on my diet first…i did hear on another website that someone with pku had 2 very healthy baby boys. so i am just wondering!

    #7310
    Avatar of Breanna
    BreaMarie91
    Member

    Hey mothertobewannabe,
    You do need to be on diet to have a baby. If you don’t the high phe levels can cause a lot of problems for your baby. I was told last summer when I went to PKU camp that whatever amount of Phe your taking it will be 1.5 times greater for your baby, which is why phe levels during pregnancy are generally suppose to be between 2-4 mg/dl (or 120-240 umol/L). If your not on the diet during pregnancy and your levels are high your baby could have a lot of problems like congenital heart defects, microcephally (small head), mental retardation and the list goes on.
    Basically, it’s better to be on your diet.
    Breanna 17 CPKU

    #7313
    Avatar of petrina
    batwoman
    Member

    hi girls…i am trying to get my levels down to try for another baby (i have a beautiful 3 year old). i am finding it soooo hard! i thought it would be so easy this time since i knew what had to be done but….. they just wont come down!! it’s so frustrating!!! seemingly i am not eating enough!! anyone else trying at the minute…would LOVE to chat to someone who understands.[/COLOR]

    #7513
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi LouLouBell, ni am PKU and planning my second baby.
    I ahve 1 perfectly healthy.
    I was on diet before conception.
    It was difficult,but well worth it. nThe hardest was not knowing from month to month
    how her growth was.IE: 4 chambers of heart,Limbs ETC.
    I had alot of sonagrams. nBut still no answers till u give birth. nJust plan DO NOT DO IT WITHOUT BEING ON DIET.
    Its a chance not worth taking plus it gives ur body a chance to get use to formula or the pill intake. nWhen i had my daughter the doctors could not believe how healthy she was.So we brought her back and forth for 48 hrs.to make sure she did
    ot have PKU. nShe doesn’t. The best was being able to give my child milk.I know it sounds silly, but i would not wish this disease on my worst enemy…. nTake care you can do it…….

    #7539
    Avatar of petrina
    batwoman
    Member

    Hi …just thought i would write to give an update on my levels…the last 5 or so have been perfect for preconception.The level last week was up though and i can only put it down to having sunday dinner at my in-laws where i ate some stuffing(breadcrumbs).I had allowed for 2 exchanges but the dietition told me that sometimes manufacturers use egg to bind the stuffing which would have put my phe levels up bigtime!
    sooo disappointed as i hope tp be able to start trying soon…but i feel good about it all and hopefully i will be back on track in no time!
    how is everyone else doing???

    #7542
    Avatar of Tracie
    Tracie_PKU
    Member

    That is still a great job Batwoman. nKeep up the great work.
    I know when i had my daughter i had my level rise as high as 10 one time.
    I thought my world was over ,but i was wrong. nMy husband and i were trying to have another one,but unfortunately i found out i cannot have anymore children. I’m not gonna lie i was heartbroken,and in a way still am.
    I wish you nothing but the best.
    I do have a beautiful Daughter. 10 years old now,but she was my miracle baby. nGoodluck i’m sure you won’t need it. nSounds like your on the right track..
    Tracie

    #7544
    Avatar of Amber
    tinkRbell
    Member

    Hi I’m new at this but I just wanted to chat about getting pregnant. I have pku obviously as do we all on here I would suppose or are familiar with it at least but I”m having a hard time and I don’t feel like my doctors are taking me seriously and I know how important it is to be on my diet during and before pregnancy and I”m just on the fine tuning part of getting my levels down. i”m pretty low now I think but some ideas to try would be nice. I got to a 3 which I’d be happy with but then the more I tried to maintain it the higher it got. Why? I’m not understanding the trick here. Any help?

    #7545
    Avatar of Amber
    tinkRbell
    Member

    Hi again. I’ve got a lot on my mind. I’m really impatient. So here’s my story, I decided back in January of this year that I wanted to be pregnant by Thanksgiving this year.So I practiced getting on diet dropped the birth control in june and my levels have dropped from a 13 to an 8 then to a 6 then to a 5 then a 4 then a 3, but… Now they are going back up. And it’s what, October, and I’m still nowhere satisfied with my levels to try having a baby. I’d like a 3. I think without special, expensive low protein foods I won’t ever get to a 2 but the doctors say 2-4 right? Ok but I can’t keep them at a 3. And I don’t even remember what I ate when I had the 3. This past week I was at a 6 but I swear I’m eating less than I was when I had the 3. I’m really impatient and really want the experience of being pregnant. It doesn’t help that everyone of my friends around me is having a baby. My one friend is due this month and I just found out another friend is 6 weeks along and its just everywhere. Babies. Why must it be so hard for me? I’m a good person I try so hard and yet I feel like it never pays off and i’ve been experimenting with the variables to get my levels down. I’ve read all the stories and questions and have gotten some of my questions answered. Thank you for asking them. I’m still stuck though. I’m not going to make my goal cause Thanksgiving is just around the corner and I’m at a 6. How do you even survive the wait of going through the process of getting it low enough? I just want it to be low and I can just be safe to be pregnant and voila. Dang diet. Dang levels. Some comfort? K I’m going to go and try to just not think about it. bye

    #7546
    Avatar of Amber
    tinkRbell
    Member

    Sorry, it’s me again. As I read through more of the website and the stories I get more questions. First what is a supplement? Is that like the same thing as formula or is that an actual supplement like vitamin supplements in a pill form? Like vitamin c? Second, those of you who have accidentally gotten pregnant and your levels were not at ideal 2-4 how and what did your doctors do to get you to drop low so fast and then have a healthy baby? Maybe I can apply those ideas to dropping my levels now, before I’m pregnant.

    #7555
    Avatar of petrina
    batwoman
    Member

    Well Tinkrbell i know how frustrating this can be….i am trying also.I kept strictly to my allowed exchanges and tried to be as stress -free as possible (with a go go go life that i seem to have) and yet my levels remained too high.why? the dietitions told me i wasn’t eating enough calories and not enough pku foods.so i tried that.still no joy.so for 2 saturdays in a row i had a full day of bedrest with regular meals and just chilled out…my levels started to come down!!! the dietitions think it may be because i work late,have a 3 year old ,a business and play football so i needed the chill-out!!may not be for everyone…but maybe worth a try? also try to eat pku pasta during the day… just keep it up girl because it is soooooo worth it!!!!

    #7556
    Avatar of petrina
    batwoman
    Member

    how many exchanges are you on? in ireland our preconception levels have to be under 250….i don’t understand when you talk about levels of 3 and 6 etc. is your 3 equal to 300 i wonder???

    #7563
    Avatar of Amber
    tinkRbell
    Member

    Thanks for the comments. I’ve also considered that too few calories and such affect my levels. I’ve also noticed that if I exercise then my levels go down but I am a busy girl and sometimes exercise is impossible. But I’m on my feet all day walking around a retail store and sometimes lifting heavy bags so I figure thats good exercise but still. Anyways, I don’t know how the preconception levels of 250 and stuff work. I read on one forum a question about that and I think it’s just different measurments but 250 is probably equal to a level 2 or 3 for me. I wonder if there is a comparison chart or something like that somewhere.

    #7564
    Avatar of Amber
    tinkRbell
    Member

    Exchanges I think would be similar to equivalents for me. My doctors estimate I should have 40 equivalents a day to get a level of a 5 which is not ideal preconception level. So I’m trying to see what my equivalents or exchanges would be to have a lower level.

    #7579
    Avatar of Tracie
    Tracie_PKU
    Member

    Hi Tinkrbell,
    I love your post name too cute. nK This is what i did.
    I measured every food intake everyday. nFor example: nBreakfast Formula (Blender full) n1 piece of toast with butter( non-dairy ) n1/2c. of cold cereal w/juice
    Snack A crap load of popsicles( they are your calories ) nLunch n2 rice cakes n1tblsp mayo ( for fat ) n1 slice of tomatoe/onion nabout 6 pickle chips n(That was my sandwich for the day) nSnack-Popsciles-they are free nDinner n6 tbsp of rice or potatoes n2tblsp butter( fat ) n1c. of either green beans or carrots. nDesert nHunts nLemon pudding(non-dairy) nAlso use sorbet nThere is also a desert called Mocha Mix.
    Non-dairy desert. nJuice intake Koolaide,7-up
    I did this same plan throughout my entire pregnancy just to be on the safe side.
    I hope this helps you . nTalk to me anytime. nTracie

Viewing 15 posts - 1 through 15 (of 23 total)
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