Community Discussion Forum New to Planning for a family, your advice is needed

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    Avatar of Natalie

    My husband and I in the process of planning for a family. I say in the process because I have to go back on my ‘special diet’. I have been off my ‘special diet’ for almost 10 years. Going back on my diet has been an experience and it is amazing how much I am missing ‘normal’ food. nHas anyone been in this situation? What was it like for you? I would love to hear how you managed it. nYour advise would be great.

    Avatar of Celina
    c mc donnell

    Hi Nattie my name is celina. i am 35 and have just recently married. My husband and i have decided that we want children. i have been very bad on my diet for nearly 15 yrs. i thought to go back on my diet would be so difficult as the last i remember i was on 7 exchanges. I have found it easier than i thought once i put my mind to it. i am now on 10 exchanges and my phe is very low if i was not trying to have a child i think i would be on at least 20 exchanges. i find this amazing. i read somewhere that it seems to be easier for someone who was off the diet to go back on to try for a baby. Do you find this? I see it has been a while since you have posted this. I would love to know how you got on.

    Avatar of christi

    I am a 32 year old adult with PKU. I too went off diet when I was young, and stayed off until my husband and I started to plan a family. We have 2 beautiful, healthy children 5, and 2 years old. I went back on diet before conceiving my first child, and had very good control with my levels. My second was a lot more difficult because I had horrible morning sickness, so my levels were harder to control. It was extremely difficult for me to drink formula and keep it down. I know how hard it is, especially when you are used to eating anything you want, but it is so well worth it. Both of my babies are completely healthy! Hang in there! You can do it!

    Avatar of Celina
    c mc donnell

    I am so happy to you have been able to have two healthy children after you were off you your diet. This is one of my concerns that maybe being off it for so long would in some way still have an effect on any children i might have.Do any of your children have pku. My sister has had a baby girl ten months ago and she was born without pku. My sister was always better than me on her diet.

    Avatar of Natalie

    Apologies but I haven’t been on this site for a while.
    I am pleased to report that I am 21 weeks pregnant. I had my ‘big scan’ on Tuesday. It was very interesting because the consultant told me what they are looking out for when the mother has PKU. The main thing they check is the heart, the brain and the overall growth of the baby. After all my checks were done the consultant said the baby had scored 10 out of 10, which was a weight off my mind. She also said that she will be monitoring me closely throughout the rest of my pregnancy to make sure the baby is growing sufficiently. nWhen I found out I was pregnant, I wasn’t on my ‘special diet’. The night I found out I was pregnant I contact the hospital and they told me what to do. The first few weeks were hard as I had to cut out everything that I was used to eating. They put me on a formula that I had never had before, maxamum XP. I had really bad sickness and I wasn’t keeping my formula down. This made my blood levels high. In the end I had to go to the doctors to get some sickness tablets. Luckily these worked but I still felt rotten. Then the hospital found out that my zinc levels were low so they put me on some zinc supplements. This started my sickness off again! Luckily the next time they checked my zinc levels they had increased so they are monitoring this closely too.
    It is an exciting time however I am and will be apprehensive till the baby is born.
    It is great to hear that mothers with PKU have had healthy children, as it gives me a sense of hope that my baby will be ok!

    Avatar of

    Nattie Congrats!!!!! im so very happy for you. one of my good friends just had a baby boy and she has pku and her pregnacny went very well . her son was born dec23 and is very healthy and doing fine! im sure all will work out for you!!!
    keep us posted!! im 21 and hope to start a family within th next 4-5 years so im a ways off but its inspiring to hear everyones story’s!!!

    Avatar of Natalie

    Amanda, thanks for your message. 4-5 yrs will come round really quickly. you never know, if this pregnancy goes well, i might be on my 2nd by them!!! If my husband had his way i would probably be on my 3rd!! nKeep in touch

    Avatar of

    nattie, lol i know it sure does. if it were up to me id have one now, but im not married and thats very importnat to me, and i am hopefully starting college soon, and i hope to go to rome when im done. after i accomplish these then i will think more of starting a family. i have a hole time line and even two baby girl names picked out so lol i guess im thinking or dreaming a head. lol . honestly im pretty scared i dont think i could keep my levels down for 15 months , id be so scared of casuing damamge to my baby, i dont think i have that will power. because of this fear i have been on the depo shot since i was 15. i recenlty asked my dr if this was bad and if it would prevent me from having kids, he said no, it will just take longer to concieve and hightens my risk to ostroprois. i considerd goign of of it for a while , but the idea of a unplanned pregnact terrifies me, though i have heard of it beign done and seen results of sucessful unplanned pregnancys i dont think i could do it, cause i know me.
    when the time comes maybe i will be less afraid , prepared and less immature!!

    Avatar of Sarah

    I am 40 and have 2 beautiful children. Back when I was going to have a family there wasn’t much about motherhood and PKU. So because of the risks my husband and I decided to adopt and give a deserving child a home. We adopted a 19 month old and a 5 month old. Maybe it was easier for us to adopt because I was adopted but it is very fullfilling. Both of my children have open adoptions so their mothers can see them. But neither have opted to see them. I email them pictures every year on birthdays and holidays. It is very rewarding. I am just open and honest with them about their adoptions. I told my oldest at the age of 6 he was adopted. I will tell my 5 year old when I think she can understand. I use a book to explain. If you have any questions let me know.

    Avatar of Tracie

    Hi Nattie,
    I’m sure you probably have it under control considering it is a couple years later.
    I just wanted to share with all the MOMMIES nMy little story.
    I was off diet for 11 yrs old to 28 yrs old,and that is when i started planning my pregnancy.
    I put myself back on diet in 1997 about 2 months before conception hoping my body would get use to the formula.
    It worked.
    I was on diet drinking Phenex 2,and measuring all my food intake to a tee.
    To get calories i ate alot of popsicles.
    I guess the hardest for me was not knowing how my daughter was doing inside.
    I had bi-weekly sonograms ,and they would always say (LOOKS GOOD),but they could not tell me ifher heart was ok,limbs growing correctly,and brain growth.
    I think i cried daily. nMy husband was wonderful,however he had the morning sickness.
    I got very lucky , and had none! nPlus my Dr. said if i did they would Hospitalize me and put a tube in stomache to make sure the formula got it me.
    That scared the crap out of me,and i told myself(you can do it).
    Needless to say my daughter cames out perfect. n8lbs 7oz 21 1/2 inches long. nThe midwife was amazed on how healthy she was. nSo for there own peace of mind they had us bring her in every 2 hrs for 2 days straight to be tested for PKU.
    She does not have it.YIPPEE!!!!!
    That was the beat feeling in the world. nYa know what is funny i was so excited to give her regular milk.(crazy huh!)
    Just thought i would share. nTo all the MOMMIES YOU CAN DO IT!

    Avatar of Lynsey

    Hi my name is Lynsey and i have pku im in a 6 year releationship and i’m back on the diet i have wanted a baby for 4 years but it was hard with no money or no where to live but now i am sorted with everying and now my blood levels are going down and i happy with how things are going for us and iv only got 5 weeks lift to get it down even more cause then it would be nice for my family to have something to look foreward to for christmas it is my wish for all of us plus id like to make new friends on here which would be nice too.[/COLOR]

    Avatar of Tracie

    Hi Linsey, nWelcome and congrats on getting ur levels started going down 2 have a family.
    It takes alot of dedication,and i pretty sure if u want it bad enough like i did ur levels will come down.
    I planned my pregnancy from the beginning. nJust make sure u have them between 2-6.
    It’s very important before conception. nPlus it gives ur body a chance 2 get use too the formula. nBelieve me morning sickness is alot easier when u already know what it (formula)tastes like before hand.
    Just to let u know i think there is no perfect time to have kids.(of course levels down first) nWhat i mean is the cost of kids.
    Its expensive,but just learn how to bargain shop. nThey (kids) will always be expensive.
    Good Luck!
    If it is possible i will do a friend Req. if u have any questions.K
    Take Care nTracie-PKU

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