Pregnancy, anyone who needs help!!

Pregnancy, anyone who needs help!!

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Pregnancy, anyone who needs help!!

December 13, 2010 in Uncategorized

I have noticed that there were quite a lot of people on here who are pregnant or want to get pregnant and are on their preconception diet on this website! I thought I would write a blog of my experiences for anyone who wanted to read them and update this blog as and when new things happen! Experiences are different for different people, and depending on what part of the world you are, your target levels maybe different! My target levels are between 100-300 umol/L I am in England. I know from talking to other people that the target levels are different in Scotland and the US. I also know they have a different method of measuring levels in the USA so these levels may not make sense to everyone. I know the US levels confuse me when I'm reading about them! Anyway I started my diet at the beginning of June and I started on 6 exchanges and had my maxamum 3times a day. I was also to do a blood spot test 3 times a week at home and send it to a lab in London. From my results, we saw that my levels came down really quite quickly and were soon too low at around 80 umol/L I was however, told I could start trying for a baby in August. My exchanges went up gradually until I was on 16 exchanges! My levels shot up to around 600 umol/L or so! My exchanges were brought down slightly. This was a very scary time for me as I had now started trying for a baby and I didnt know if I might already be pregnant or not! I found out I was pregnant on the 20th September 2010. At this point my levels were at the 500-600umol/L range, so it WAS ALOT higher than my target range but my dietician was reassuring me constantly that as long as we got my levels back down before 12 weeks, everything SHOULD be ok. I was feeling very nautious a lot of the time but I wasn't acutally being sick with the first few weeks of my pregnancy. I was taken down to 2exchanges & maxamum up to 4 times a day. At the beginning of October my levels were just over 300umol/L so I was feeling a lot better about the whole situation. By this time I was around 6-8 weeks. The levels stayed around 250-300 umol/L for a good few weeks and I was so pleased and relieved by this! Being on 2 exchanges is very hard. However, it is also very easy to stick to the diet because this isn't about me anymore. There is a little baby inside me that needs me to stay on my diet. No matter how hard seeing my partner eat pizza is, I will never eat anything I shouldnt. The fact that there is a baby to consider makes it easy! At the beginning of November, horror struck. I had been having a few days where I was feeling really nautious and was suffering with terrible headaches. I was managing to drink my maxamum and eat my 2exchanges but eating anything more than the bare minimum was just too much and my levels shot up to nearly 400umol/L again! I had been feeling extremelly unwell and it was only one level that went that high. The next levels that I received showed that I had got back to the target range again, and I breathed a sigh of relief. The 16th November was my 12 week scan at my local hospital! This would be the time where I would be reassured that everything was ok, or else all my fears would be realised and that they would tell me there was something terribly wrong! The Tuesday morning between me and my partner was extremelly tense. We argued and shouted at each other. It was all just our nerves of seeing if everything was ok or not coming out. The appointment was at 10.40 so we didnt have TOO long to wait in the morning. We got to the hospital quite early and we hardly spoke whilst in the waiting room. When called into the scan room, I had the cold jelly spread on my stomach, and they found my baby snuggled up in my left hand side! Right in the corner! The lady played the heart beat, and the relief on mine and Keirons face was a picture! We were both nearly crying! However, the lady kept clicking and playing the heart beat and wasn't saying anything to us. "Is everything ok?" I asked, "yeaahhh..." she replied, which wasn't too convincing! Anyway another sonographer who had been in the room from the beginning went over to the screen. We were really quite worried by this point but she said "what a beautiful baby!" She showed us the brain, which I was relieved to hear was the perfect butterfly shape. The baby had beautiful arms and big feet. They also showed us what they thought would be the lil man part. It was only 12weeks along so they warned us not to go mad buying lots of blue, but from what I saw I was convinced! At the end of the scan, everything was confirmed to be ok, and the sonographer said "thankyou" for letting her see such a beautiful, well behaved baby! We were told to make an appoinment for 22 weeks at that local hospital which is set for the 21st January 2011. My levels stayed within range for the next few weeks and I had an appointment with the PKU clinic in London on the 26th November. We went through the levels and my dietician was very pleased with my progress. She told me that the levels had shot up but as I was ill and they werent in the dangerous zone, there shouldn't be anything to worry about. I was to arrange my 20week scan with the Evelina Childrens hospital which is a cardial scan just to check the baby's heart. This will be on the 10th January. I thought that this would be the only additional scan to the usual. My levels dropped to around 150umol/L and on the 9th December, my dietician told me I could go up to 4 exchanges!! How exciting another 2 exchanges!! I had an "antenatal appointment" on the 10th December, to which I thought was just a routine antenatal appointment. When I got to the appointment I was told that I had been referred by my midwife to this appointment because of my PKU. So I saw a consultant who was actually really quite rude to me. Because I didn't realise that it had anything to do with my PKU, I didnt think to take anything regarding my PKU with me. Whenever I normally tell any medical person about it, they haven't got a clue what I am talking about! Anyway she told me that she would have arranged the cardial scan, which I had already booked for the 10th January. But she told me I would have ANOTHER scan in January around 20/21 weeks! I am now waiting for that appointment and am quite looking foward to seeing my baby three times in January! I hope this helps some people realise the worries and stresses that trying for and having a baby can cause. But I am only 16 weeks today so I'm still only about a third of the way through. I will update my blog, because even if it doesn't help anyone else, I have found it quite theraputic to go through and remember what was going on! Althogh I do hope this HAS helped someone else, not just me. Even if it is only one person it will have been worth it!!

9 Reviews of Pregnancy, anyone who needs help!!

  1. Registered: Jul 22, 2010

    Posts: 0

    independence, Missouri

    good luck to you and your bundle of joy. Thank you for sharing your experience here. i don’t have PKU but my almost 1 year old son does. congratulations to you and your husband on your soon-to-arrive baby. Mom to mom, it has been the most rewarding thing to be a mommy. Exhausting yes, but i wouldn’t have it any other way. Take care!

  2. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    Aww Thanks Patricia! x

  3. Registered: Nov 7, 2009

    Posts: 0


    Hi there, great to read your blog and to find someone in my position. My name is Patti-ann and i am 25 weeks pregnant. I am based in Belfast, I had a horrendous first 4 months of pregnancy. Was constantly sick and vomitting up my supplement which of course upset my levels. I had to be hospitalised twice due to dehydration. It is indeed a very scary time with all the abnormalities which our babies can be prone to. I too was astounded at the lack of knowledge out there amongst some health care professionals. Im glad to say im feeling great at the moment and enjoying my pregnancy at last after being miserabe for so long. Im still only on 3 ex. my levels are sitting inbetween 200-300. Is really hard as im feeling hungrier everyday.I have my fetal cardiac scan today. Wish me luck and keep in touch. xo

  4. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    Oh I am sorry to hear you had such a rough time in the beginning! Yep, good luck and let me know how the scan went! x x

  5. Registered: Dec 30, 2009

    Posts: 0

    Moorpark, California

    Thank you for writting, it was good to hear from someone who doesn’t just say how “great” everything is, but I am sure that it feels so rewarding to know its not just you you are doing this for. Can I ask you a question, in order to have your levels between 100 and 300 on 2 exchanges what does a days worth of food look like, what do you eat? thanks, Katie

  6. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    kflood0401, on 2 exchanges, a general day of food is mushrooms on low protein bread toast for breakfast (so that is free). Then at lunch time, I would have a packet of crisps (1 exchange), an apple (free) and some free sweets. For dinner I would weigh out an exchange of chips with some free lasange which I would make myself, or some free pasta with an exchange of sauce or something like that.
    With all the maxamum I was on, I never really got hungry and sometimes I wouldnt even eat that much, as the suppliment is so filling four lots in a day is a huge amount! In the beginning, it was far from great! I felt sick and suffered with head aches a lot, sometimes I think I may have even had migranes.
    Now I am starting to get a little bump and feel tiny little flutters, it is becoming more worth it. It will be worth it in the end and it WILL be great. But in the beginning it was really difficult. Like I said, what made it so easy is because I know its not just me to worry about now! =) I’m glad to hear that is HAS helped someone =)
    Feel free to ask any other Qs and messgae me if you like?! x

  7. Registered: May 27, 2009

    Posts: 0

    , Florida

    Great to read your story. My children are not PKU. I was relieved. At first, I decided that I would go back on diet (in 2000) IF my daughter had PKU. She did not so I did not stick with it. Actually, my BioMarin rep (makers of Kuvan) encouraged me to follow up with a nutritionist and doctor that specialize in PKU. I did and am very happy to be on the diet. I work for a great company that covers PKU very well. That is helpful.

    Under my blog I asked what state you were in, well, now I see you are across the big pond.

    What are exchanges? I also see a difference in measure- my Phe levels use 2-4 as the normal range. You use hundreds of something. I may be a bit behind on some of this this since I had been out of PKU info and off diet from about 12 through 32, and am only now really beginning to understand it better.

  8. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    The exchanges are just, if you look on the back of a packet of food, 1g of protein is an exchange. I know you measure PHE to work out how much you can eat. I have no idea what PHE is, Im guessing its just phenylannelyne or something like that but I wouldnt know how you calculated it.

    Yeah I know there is a difference in the way that we measure the phenylannelyne in the blood but I wouldnt know how it is done here or where you are. I just know that they need to be between 100-300 here and 2-4 where you are now! lol, rubbish I know!

    Yeah I was talking to some of my family about going back off diet or to stay on it. I feel so much better within myself to be on diet. I don’t feel depressed or anxious anymore, but I do really miss a good meal. I miss chicken and baked beans the most! lol! I will have to talk it through with my dietician I think!

    Sorry I didnt see your comment on your blog. I will have to reply! x

  9. Registered: May 17, 2011

    Posts: 0

    Mina, South Dakota

    Well, I posted back little while ago about the devasting news that our daughter was not on PKU diet and got pregnant. Problems started at 8 weeks. She was losing weight almost a poiund a day. Placed in hospitl for a week to get level leveled out and get on a good diet plan. Since then she has done pretty good, level has gone up once. I fear the worse. No one can give me answers as to if this did caused issues with the baby or not. I just want answers to know what we will be facing. She is doing most all she has to that is told to her to have a great pregnancy. But things are still up and down……………

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