Pregnancy Questions

Pregnancy Questions

Avatar of Sarah

Pregnancy Questions

May 19, 2011 in Uncategorized

Hi, I'm 31 with classic PKU. I'm not pregnant or planning to be pregnant for awhile. However, I just recently got married and know that because of my age & PKU I should think about family planning sooner rather than later. I was wondering if women who had been pregnant can give me a little more clarity on the process. I have heard a lot about pre-pregnancy diets and such on here. What is that like? Some women have said they could tolerate more protein while pregnant. Was that true for you? How often did you have to do blood draws? Did insurance cover everything? What sort of low protein things did you eat a lot of? I would love to hear any and all stories.

7 Reviews of Pregnancy Questions

  1. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    Hiya hun! I am 38 weeks pregnant right now! I have been writing a blog on here myself! I have written 3 little bits about my experiences! I would say 2 have a lil read of my blogs, and if there is anything on there that still hasn’t been answered, please feel free 2 message me! I will always help if I can hun, any time! The only thing is I am in the UK so the insurance Qs I wouldn’t be able 2 help with! Definately have a lil look at my blogs and give us a message if there is anything else! Hope it helps! x x x

  2. Registered: Aug 11, 2009

    Posts: 0

    , Utah

    HI :) I’m 21 and I am 14 weeks pregnate! Umm I wasnt plaing this at all it just was a huge supirze!! Well I gotta say for me this pregnacy is very hard to deal with for me, I am high risk but thats cause of this being unplaned. With some moms to be yes they do get to eat more protein, I’ve been told if everything goes well i will get up to i thing 40 or 50 gm or protien by my 3rd trimester cause the baby’s liver takes over yours and you eat more!. I take my blood 2 times a week, and low protein i eat is salads lots of it. I have been going to a specialist making sure that this baby will be ok. Unfortanly there is something wrong with my baby because of a level of 11, I wasnt told that when your level is high it means the baby;s level dubbles… So even if mine is an 11, the baby’s is a 22 :( I’m not getting the info I should be from my pku Doctors so now my baby is suffering. I go to ever Dr appt and follow my diet, but i still end up with high levels. I’m trying really hard to do everything i can for this baby and it seams like nothing is working… But one thing ill never do is give up trying to give this kid all i can. All i gotta say is PLAN A HEAD! Also get all the info you can threw your Dr’s hopefuly you will have better Dr’s then mine when you decide to have a baby. :)

  3. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    Just adding to pkugurl99, I would say YES definately plan! I was on diet for almost 3months before I got the go ahead! All of my scans have all been good news! I am due in a week tomorrow, I am on 36g of protein! I speak to lots of people on facebook with PKU, and this is the highest amount of protein anyone has heard of! One of my friends was on 2g of protein throughout the whole of their pregnancy & they had planned it! Everyone is different though & if your child has PKU, your PHE tolerance is not as likely to go up! message me if u have any Qs x x x

  4. Registered: Jan 16, 2011

    Posts: 0

    Milwaukee, Wisconsin

    Hey Sarah,
    I have heard that you have to be VERY strict on your diet when you are pregnant, Thats why I am gonna pick the PERFECT man to be my boyfriend/husband. Husband if I am lucky. Still a while to go but yeah

  5. Registered: Jun 23, 2011

    Posts: 0

    Dublin, California

    Hi Sarah1,
    I am actually trying to conceive and my doctors in the beginning of this process have advised me to be on my diet at least 3 months prior to conception, and only consume 14 grams of protein daily. I definitely would say to make things easier for yourself during this time it’s better to plan ahead. I was told that once pregnant it is possible to consume more protein because the baby is taking it… =) and I can’t wait!

  6. Registered: Jul 1, 2011

    Posts: 0

    sheridan, Indiana

    I’ve been through 2 pregnancies with PKU and have to say they were not planned. However, I knew I was pregnant within 2 weeks of conception. I followed my diet religiously. My levels during pregnancy were between 2-4. I tested weekly. The first trimester is the most critical time. The first three months are when heart valves are being formed and brain development is also going on. Your first trimester will not be easy with your diet. But remember who your doing it for. In fact any support will definitely be needed. I ate alot of salad and alot of sweet stuff high in sugar but low to free phe. When you get ready prepare things you’ll eat that off the free list of foods. I wouldn’t wait too long but I had aOBthat specializes in high risk preganacies due to PKU. Between her and my dietician I had enough help. Neither one of my kids don’t have PKU. Just because you have it doesn’t mean they definitely will.


  7. Registered: Nov 14, 2011

    Posts: 0

    Grande Prairie, Alberta

    Hi there just had a quick question I am trying right now my levels are where they are suppused to be. I have such high prolactin levels we are having issues. Has anyone ever had a hard time due to pku increasing prolactin levels? Thanks so much

Add Comment Register


Your email address will not be published. Required fields are marked *

Comment *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Processing your request, Please wait....


Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional