Community Discussion Forum New to PKU (hyperphe) and want to have a baby! But can't get levels down to try!! HELP

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    Avatar of Lauren
    I have PKU (hyperphe) and live in the UK – Southampton. I am going back on diet in order to try to conceive. I am 28 in Feb and have always wanted to have a child but getting my levels down to where they need to be has been impossible I have tried on/off for years but give up when I am unable to get them low enough.

    I would love to be able to find someone with PKU who has had a child to talk about how they did it and offer some support and advice on how it affected them throughout the pregnancy.

    I dont know recipes – I dont really know what I can eat – just have a long list of all the stuff I can't! It seems impossible to eat meals. I dread meal times as I cannot find anything to eat. (Sorry feeling a bit sorry for myself today!) 


    I'm nearly 28 and my husband is 35 and we have been desperate for babies for a long long time but it seems impossible. Any way you can help would be amazing.
    Avatar of Julie

     You can add me as a friend, also.  If you have any questions, I would be glad to help.

    Avatar of Julie

     See my previous message I sentt in response to your  message.  I didn't see this prior to my response.  

    I feel for you right now, I really do.  I know it is very difficult!  I've been there!  But it is something that you can achieve.  It will take a lot of work, will power and discipline, but trust me, it will be SO worth the effort!  

    Try going to  They have some cookbooks on their website.  One is similiar to the one I used during my second pregnancy.   There is also a recipe tab on this site that has some good information on there, too.  I have an old recipe book from my first pregnancy from 1992-1993 that has some formula recipes in them.  I can forward to you if you like.

    Take one day at a time, and keep going at it.  You will do fine.

    Avatar of Lauren

    Thank you! I have added you as a friend now. I have found a site called and some of those look pretty good. I will try out pkunews as well and maybe get myself a cookbook ordered. Yes to forwarding me some recipes I will take anything I can get. I am so bored of having the same things.

    I cannot wait to have a little one! I am kinda hoping for twins tho! Not sure I can do this twice! I looked into the drug Kuvan as I had not heard of it before. Is it something you think I could take whilst pregnant? I couldnt find anything about it and pregnancy.

    Thank you so much for your help and support. I am sooo glad to have finally found someone else with PKU who has been there and done it! In fact I have never really spoken to anyone about it who actually had it! So it is really appreciated. Stand by for more questions! I'm sure there will be many more :)


    Mrs. G3013,

    I have PKU and my big burly son was born 15 years ago. I started on diet 1 year before I conceived. Once I was pregenant My body needed more calories and so I needed to eat more. I managed to keep my level between 1 and 6 throughout the entire 9 months. By the third tirmested I was eating high phe foods like regular hotdogs and pizza because my level was getting too low. The day I had my big bouncing baby boy my level was at 2.0. He was born healthy and beautiful. It was so worth all the counting and cooking and blood tests. When I saw his little face all the difficulty of the past 9 months just melted away. It was so worth it.

    I am 41 now and my son is the spitting image of his father with the exception of his big pouty lips and his freckels. Those came from me.

    Good luck I wish you well.


    Avatar of Ann

    I have the pku and i wolud like to know mover about it i was just told that i have the pku. I am 40 yold and i need to go back on the pku how can you do it. I went back on it four a ltter bet but i just can not do it

    Avatar of Joelle

    Hello.  I just joined here.  I am a classic PKU and I have one child..a boy who is 3 years old.  I am now currently trying to get my levels down for a second child, but it been a little difficult.  The levels seem to keep going up and down and not sure why.  Maybe I could offer you some advice and help you out.  I would like to talk to you if you want.

    Avatar of Snuffles

    From what I know the only answer is go back on the strict pku diet again, as that the only to lower the Phen in the blood.Seeing pku clinc would take the guess work out of measure how much protien is in your diet. You have to lower the Phe level to acceptable level  so, that will not harm the development of the baby in womb.

    I am a classic case pku  and my Phen is always of over the mark.


    I am 31 with pku and live in the united states. i am also trying to get my levels low so i can concieve and have a healthy baby. i found that it is really hard when you dont have someone to help you along who is going through the samething. i would love to be your penpal and we can go through this together? add me as a friend…. and if anyone else who reads this who have had kids and who are trying to get phe levels low to concieve please add me. i need all the help and motivation that i can get.

    Avatar of Amanda

    Julie VK- I am brand new to this site, married, and planning on having children. I would love some advise from you as well! I just want to make sure that I do everything I can…i recently read that if levels are not low enough, there is over a 90% chance of delivering a child with mental retardation. This, of course, makes me very nervous!

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