PKU.com Community Discussion Forum Parent support Un planned pregnancy

Viewing 15 posts - 1 through 15 (of 15 total)
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  • #9295
    Avatar of Simon
    simoncrum
    Member

    Hi,

    Im simon, this is my first post.

    So we have just found out that my other half is pregnant.  So far she may only be 2-4weeks, we will be seeing our doctor friday.  Im terribly worried about her phe levels.. she has been quite good on her diet the past month, but has yet to have her levels checked from the past 2 years. Previous to last month she has been on and off her diet for years.

    As from today she will be cutting right back to basics.  She currently drinks 3 pku cooler 15 each day, and lives off of potatoe and other green veg..

    How long would it roughly take for her to get her phe levels right down..(assuming they may be high) while we wait on our appointment with the specialist, can much damage have been already caused to the baby? it is still a very early stage but im aware that these are the vital weeks and a proper diet and phe level check should have been done before conception..

    Has anyone here went through an un planned pregnancy without having a super organised diet before hand?
    thanks
    Simon.

    #9299
    Avatar of Becky
    beckyboo
    Participant

    I personally had to do my diet for 3months before I was told I could start trying for a baby. The levels went down VERY quickly, but they just wanted to make sure that my levels were stable before starting to try. I hadn't been following the diet AT all before I decided to go on the preconception diet, and the levels went right down as soon as I started doing the diet. It is always better to plan for these things yes. However MY dietician said that as long as the levels are down within the first 10 weeks, everything SHOULD be ok.

    I would advise to add Louise84 (I think that is her name). She had 2 unplanned preganancies, and she has been through it. She is always willing to talk and to help other people! Im sure she will reply on here when she sees that you need help! 

    I can only tell you to read my blog, I planned for my pregnancy but I have had high levels on and off. I can only tell you what I know. I know Louise will help you though.

    Please keep us updated with how everything goes! I wish you and your partner all the best x x

    #9306
    Avatar of Cook4Love
    Cook4Love
    Member

    There is also a great resource online called Maternal PKU support — they might also be a good place to get information.  The website is http://maternalpku.weebly.com/

    Best of Luck!

    Brenda mom to Molly, age 10 CPKU

    http://www.cookforlove.org

    #9342
    Avatar of Simon
    simoncrum
    Member

    Thought i should up-date you all on our progress..

    so we are now comming up to week 12, near time for our first scan.  We are real nervious!!

    Kiera was able to get her diet on track pritty quick, infact she is too low on her phe levels, sitting around 60, when they should be 150.  she has been on 2 exchanges, then was bumped up to 4, now she is on 6.  so we hope the next blood test will show an improvement in phe levels. 

    When we have our scan I will let you all know … finding the wait a little hard,

    Simon + Kiera xox

    #9343
    Avatar of Becky
    beckyboo
    Participant

    When is the scan? x x

    #9344
    Avatar of Nicole
    Nicole1982
    Member

    Good Luck xxxx

    Scans are always Nerve wracking xx

    #9368
    Avatar of Simon
    simoncrum
    Member

    Hi all..

    So we just had our scan yesterday..

    Scan shows kiera to be 9weeks 3days.  The baby looks fantistic with a good strong heart beat…. PHWEAW

    Doctors are very pleased with the progress, and her phe levels have been fantastic..(86-118) However we would like them all to be over 100, but the doc says that between where we are and 250 is great.

    So we can now relax a little and wait for our 21weeks scan, i guess this is when we now panic about the development of brain and lungs and such.  Im guessing that this child will have my nervs wrecked until he/she is 21.

    See you in 10weeks or so..

    Simon

    #9369
    Avatar of Becky
    beckyboo
    Participant

    Tehe! Simon, I was excactly the same, you can breath a sigh of releif, but before every other scan you do start 2get all nervous and apprehensive again! :) I look forward to hearing your updates!  x

    #9370
    Avatar of Nicole
    Nicole1982
    Member

    Aw sooo glad Simon x

    We all panic and get nervous before any scan,  Your partner just needs to stick right into her diet and keep her levels down and ur babies little brain lungs and heart will form perfectly,  I think the diet myself was a struggle throughout my pregnancies but with a supporting partner and encouragment from him, it kept us both strong, thats what you both need to do…

    Good luck and all the best…i'll pop back in to see how you guys get on xxx

    Nicole x

    #9383
    Avatar of Nicole
    nikkim90
    Member

    i dont have a reply however a concern, my doctors neglected to tell me that it was this serious to have a baby now im anout 7 weeks and im almost positive that my counts are through the roof do to the lack of medical insurance i had and i havent taken my formula for like 3 years now. what can i do am i to late should i expect to have a mentally retarded baby. Im so scared.

    #9394
    Avatar of Nicole
    Nicole1982
    Member

    Hi…

    I really am not an expert to say but i am going to say through expierence, I found out i was pregnant when NOT on any sort of LP diet when i was 20 years of age…I got tranferred straight away to Abort the pregnancy, i was sooo against abortion growing up but was advise too from my Maternal Midwife and and consultant basically i had no choice, am sure i was very early around 8 weeks but had levels soaring over 1500, i still think about that expierence alot and i think its damaged me mentally in some sort of way.

    But you hear all different stories, some find out there pregnant early on and start there diet straight away, some babies healthy some babies have PKU syndrome it will affect them in all different ways they will have behavorial problems, mental problems, small heads, some kind of form of mental retardation.

    I am sorry your going through this but my best advice to you is to get intouch with your PKU dietician or consultant to see whats the best desicison for you :-(

    Nicole x

    #9479
    Avatar of Simon
    simoncrum
    Member

    HI,

    Its been a while now since i last up dated you on our progress.  We are now 26weeks in and im happy to say that both mummy and baby are great.

    We had our big scan back at 21weeks, and we have been having regular scans and visits with our doctors every 4 weeks.

    Kiera is doing great, she has never had a high phe reading and all her bloods are reading below 220.

    She has been on 8 exchanges since week 12, when we first found out about the baby she was cut to 3exchanges to drop her phe levels quickly. She now has to take Tyrozsine supplement also .

    I can also confirm for anyone who cares that we are having a little baby boy.. Im over the moon that my first will be a son.. we always get our doctor to check at our 4 week scans lol, id hate to have to re-paint the room pink now :)

    Well i keep you posted folks.. bye,

    Simon x

    #9481
    Avatar of Becky
    beckyboo
    Participant

    Oh my goodness Simon! I have just written another blog and wondered how you were getting on! Congratulations! That is such good news! Her exchanges and levels sound great too! Hopefully the exchanges will go up as pregnancy goes on, like mine have! :) Do keep us updated and if you are interested do take a look at my latest blog :) Im nearly 38 weeks now! :)

    I wish you all the best with your little man! :) 

    Becky x x x

    #9538
    Avatar of Simon
    simoncrum
    Member

    OHHHH its update time..

    So guys My baby BOY is coming out in 2 days.. !!

    Everything has been great throught the pregnancy, her levels remian super and our we man who we named Finn is great. Another up side is she has gone up to 17 exchanges.. quite a good meal for her lol.

    we have been getting regular scans and tests (Every 2weeks) :( im just glad our health care is free in the UK.

    So I will Be back in touch in a few days with a picture of our baby boy..

    Wish us luck

    Simon x

    #9565
    Avatar of Becky
    beckyboo
    Participant

     OH gosh I saw this AFTER I sent the message!! PLEEEAAAASSSSEEE show us piccies! I have been wondering how  you have been getting along!! Love & Best Wishes From Becky & Keira x x x

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