My pregnancy the up's and down's

My pregnancy the up's and down's

Avatar of Louise

My pregnancy the up's and down's

October 26, 2010 in Uncategorized

Hi everyone well I'am Louise and I'am PKU and 8 weeks pregnant, today my dietitian called with my results and they were 360 which is to high but I have no idea how or why they have gone so high, as I have not done anything different from previous weeks and those bloods were great 50-200? It has really upset me as I have two boy's that were born with serious medical problems as I didn't know I was pregnant until 8 weeks + and by then the damage had already been done as I wasn't doing the diet at all I was eating everything and anything. I do not want another baby with medical problems I couldn't handle knowing that it's because of me that again I have had another child with problems, especially when I'am doing everything right this time round and for it not to make a difference will just destroy me. I have till Thursday to try and get my levels back to were they should be but that's easier said than done when I don't know why they've gone up in the first place. My dietitian had me on three cooler 20's and one cooler 15 with seven exchanges but because of my levels she has taken me down to four exchanges, so I will be back Thursday and let you all know how my levels are doing, wish me luck.

13 Reviews of My pregnancy the up's and down's

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    good luck!! you will get it under control — :)

  2. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    Good luck hun I hope its all ok?! x

  3. Registered: Oct 26, 2010

    Posts: 0


    Hi Katiemag16 and beckboo thanx 4 ur comments they mean alot!

    Had my blood results 2day and there now at 520 not good at all but i know what it all is now as my dietitian explained 2 me im not eating enough, since i been going clinic i have been staying at the same weight and i should be putting on she said. That is were the problem is im not eating enough calories, so im now under strick instructions 2 stuff my face lol im not on 3 exchanges and i have 2 eat 3 meals a day plus 3 snacks in between, not gonna be easy as im not really a big eater b ut her might as well take advantage of the situation wile i can, i have 2 eat and eat and eat and all fat n podgy it’s 4 the baby lol Anyway i’ll keep u all up dated with how things r and i have my scan on tuesday so if i can i’ll try get a pic on ere. ok thats all 4 day bye x

  4. Registered: Jun 11, 2010

    Posts: 0

    Sittingbourne, INTERNATIONAL

    Hi Louise!

    Just to let you know, I had that problem! My levels shot up when I was just using my exchanges on sweetcorn and potatoes (tryin 2b healthy 4the baby)! My dietician told me to eat lots of calories but still eat lots of free fruit n veg! I am now just on 2 exchanges. I have lost weight since bein pregnant :-| But having said that, I havent weighed myself in 2weeks so I’m slipping! It is REALLY hard to get lots of calories with jus 2 exchanges! So I know exactly what u are going through! (I’m 10 weeks pregnant, this is my 1st though) Also I have 2 have 4 lots of my suppliment so I know what u mean about not wanting 2 eat!

    I have been munching out on lots of sweets, drinking lots of fizzy and I found the free herby crackers quite nice so I keep eating those with butter! My sister made me a veggie lasange with the lasange sheets that are free so I can make myself some more now. I have that with chips or jacket spud 4my dinner =) its actually quite filling!

    Let me know if theres anything I can help you with!

    Bex x x

  5. Registered: Oct 26, 2010

    Posts: 0


    Hi Becky

    Well how mad im 10 weeks 2day lol and yes it is hard and i have 3 exchanges dont know if i could do 2 lol ur a stronger person than me lol yes the 4 med’s make it so hard 4 u 2 want 2 eat as there so nasty lol im only just managing at the mo 2 keep them down with having 2 eat more than i want and im finding myself borking when eating anythin like im full and just cant fit anymore in but i’ve hardly eaten anythin. Sorry 2 speak about borking lol u probably dont wanna hear that lol

    This is the hardest time i’ve ever had wile pregnant, just honestly cant wait till it’s all over! lol And im the 1 saying i sooo wanted more kids lol paying 4 that now aint i lol

    Hope 2 hear from u soon and that all goes ok 4 u and u get ur exchanges back soon lol

    Lou xx

  6. Registered: Sep 8, 2009

    Posts: 0


    Hi Louise,

    I know what ur going through, ave been there done that with my two girls and now my partner and i are talking about a third even tho i know how hard its going to be AGAIN. My levels were high throughout most my pregnancy but i had severe morning sickness and couldnt even hold water down, and calories are so important throughout the pregnancy, I was that bad i was admitted to Hospital a few times and put on a drip because i was dehydrated. I remember my dietician telling me to drink the original Lucozade as the other ones have PHE in them as these are very high in sugar so you could try drinking this and try topping up your portions i know its really hard as i too was on 4 PKU Coolers 20’s and there big pouches but if u try drinking them after each meal it works out better, I was on Breakfast then snack, Lunch then snack, Dinner then snack and Supper then snack its alot, but its important for baby, Order lots of Biscuits on prescription and learn how to bake, Shortbread and crumbles Chocolate and banana loaf all high in calories but really yummy.

    I wish you all the best x x

    Hope you dont mind me asking, but like every PKU mother we’re very curious what kind of medical problems high levels can cause, do you mind sharing and is it PKU related and do your boys have PKU themselfs??


    Nicole x

  7. Registered: Oct 26, 2010

    Posts: 0


    Hi Nicola

    I dont mind at all telling u about my boys,
    The eldest Vinnie was born with:

    Imperforate Anus:

    Diagnosis and early treatment

    For neonates born with an anorectal anomaly, early treatment is crucial.

    During the first 24-48 hours of life in a newborn with an anorectal malformation, the following 2 questions should be answered:

    Does the newborn have any associated life-threatening anomalies that need to be addressed immediately?
    Should the neonate undergo a primary procedure without a protective colostomy, or should he or she undergo a protective colostomy with definitive repair at a later date?
    The surgeon must also determine whether female neonates have a dilated vagina, if it should be drained, and whether urinary diversion is required. These maneuvers are intended to prevent sepsis and metabolic acidosis.

    Colostomy versus anoplasty

    The decision to perform an anoplasty during the newborn period or to delay the repair and perform a colostomy is based on physical examination findings in the newborn, the appearance of the perineum, and changes that occur during the first 24 hours of life.

    Operating earlier and in a single stage is potentially beneficial to the patient, but this should be decided carefully, based on the specific circumstances of the newborn and the experience of the surgeon. A more conservative approach is warranted in neonates with low birth weight and associated cardiac or respiratory conditions. The indications for colostomy compared with anoplasty based on *** are as follows:

    Newborn boys
    Anoplasty – Rectoperineal fistula
    Colostomy – Rectobulbar urethral fistula, rectoprostatic urethral fistula, rectovesical fistula, imperforate anus without fistula, rectal atresia.

    He also had,

    Tracheoesophageal fistula:

    A fistula, from the Latin meaning ‘a pipe,’ is an abnormal connection running either between two tubes or between a tube and a surface. In tracheo-esophageal fistula it runs between the trachea and the esophagus. This connection may or may not have a central cavity; if it does, then food within the esophagus may pass into the trachea (and on to the lungs) or alternatively, air in the trachea may cross into the esophagus.
    TEF can also occur due to pressure necrosis by a tracheostomy tube in apposition to a nasogastric tube

    Babies with TEF or esophageal atresia are unable to feed properly. Once diagnosed, prompt surgery is required to allow the baby to take in food. Few TEF children have problems after surgery, however a number develop feeding difficulties and chest problems. Some TEF babies are also born with other abnormalities, most commonly those described in VACTERL association – a group of anomalies which often occur together, including heart, kidney and limb deformities. 6% of babies with TEF also have a laryngeal cleft.[2]

    He also had:

    Hart murma but at about 3-4 weeks it cleared up thank god!!

    And i was unable 2 name him as they were not sure of the *** of the baby when born.

    Frankie was born with a small brain and so his head was 2 small 4 his body but u would never of noticed it!
    But due 2 that he now at almost 7 can not talk at all, he make grunts and screams ect but that is all u will get out of him. Because of this he uses maccaton 2 communicate with u.

    I hope this has given u and any1 else who reads this an idea of the dangers of not doing the diet per pregnancy!! i was only 8 weeks or so but all this damage was done with in that time!!

    speak soon i hope bye 4 now and plz if u wish 2 know more just ask, im happy 2 answer anybodies questions

    Lou x

  8. Registered: Sep 8, 2009

    Posts: 0


    Thanks for sharing Louise x

  9. Registered: Oct 26, 2010

    Posts: 0


    Hi Nicola
    sorry i frogot 2 confirm that it was due 2 the pku that my boys were born with these problems, the doctors couldn’t prove it 4 definite as his conditions he was born with all linked 2gether as a type of syndrome but i cant remember what it was, but they said it was most likely cos of my pku.

    Lou x

  10. Registered: Dec 10, 2009

    Posts: 0

    conway, South Carolina

    how is it going now wit the .pregnancy

  11. Registered: Oct 26, 2010

    Posts: 0


    The pregnancy is not 2 bad it’s just hard managing the levels as there constantly up n down with the baby growing and needing more as it grows then ur body adjusts and then baby grows again lol a pain really but u just gotta stick with it it worth it in the end!!

  12. Registered: Oct 26, 2010

    Posts: 0


    Well hi every1,
    I have managed 2 get my levels back down im now at 237 which on the higher side of what the doc’s n dietitians want it 2 be but it’s with in the ok range so im happy lol

    Still only on 3 exchanges and it’s killin me im constantly hungry and have got bugger all i can eat lol i just pray 4 the day they start givin me my exchanges back lol

    Went 2 clinic on Wednesday 10th November and my doc is very plz’d with me even tho my levels went up they weren’t major and baby was still safe as i got them down again pretty quick n thats the key 2 it all if they start goin up, get them down asap the longer they stay around they high level that there at the closer the baby gets 2 problems when born or if they just leep goin up n up 4 a wile.

    Got anti-natal on Tuesday 16th November and lookin forward 2 it im happy and feel good that im doin well as the doc said n that means healthy baby and thats all that matters!!!

    Spak again soon gals lol bye 4 now xxxxxxx

  13. Registered: Sep 28, 2016

    Posts: 0

    No Location

    Hi my name is Sarah. I am 18 almost 19 weeks pregnant currently with my second child. I have pku….my first baby was born healthy but my levels were up and down. I found out at 6 weeks and I was off the diet at the time. I went back on immediatley but still struggled somewhat.
    This pregnancy I found out at 4 weeks and was mostly off diet as well and immediatley went on. My levels are starting to go back up and im a bit worried. They were at 13 the last I checked.
    My big thing right now is I love mexican food—its a craving!!! I want to know a bunch of different low protein food/snack ideas…..can you all give me some advice????

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