Community Discussion Forum Adults and PKU on the KUVAN trial and want 2 try for a baby soon

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    Im Louise 24, PKU. I am on the KUVAN trial and it is working very well for me – I am eating a totally normal diet ( meat, dairy eggs milk) and I don’t think I have had a blood level much over 600.
    My question is – does anyone know if they know anything about using KUVAN in pregnancy?
    I already have a perfect little boy, did it by restricting phe intake and taking supplement under close direction from hospital.
    I know KUVAN works, but I do not want to use this method during pregnancy. nAlso – how long do you think I will need to be free from KUVAN before I concieve? I will be on the strict pre-pregnancy diet for 6 months anyway.
    I did not plan my last pregnancy – and it was such a stressfull time – wondering if my baby would be ok. Thankfully he was fine.
    I have been told that the KUVAN trial I am on is until december 09. And it is imperative that I do not get pregnant – but I will not put off having a baby for it. I want to help with the research, but we know it works now, and I can’t put my life on hold. I do not want too large an age gap between my children.
    nAre there any more PKU men or women out there about to become parents?
    Take care, lou xx

    Avatar of Breanna

    Can’t you just speak with your doctor/dietitian and tell them that you would like to become pregnant and your stopping Kuvan for now?
    I was in a trial for Kuvan that started in October. It ended in late February but because Kuvan was approved by FDA by then I have been able to continue taking it. Around Christmas I was considering going off of Kuvan. Of course I wasn’t considering going off for pregnancy, I think that would scare my mom . My doctor and dietitian were very supportive of whatever decision I was going to make. Basically their attitude was whatever makes me happy makes them happy. In the end I decided to stick with Kuvan for now and I’m allowed 1000 mg of phe with my levels usually around 4mg/dl (or 240 in micromoles).
    I personally don’t know much about Kuvan and pregnancy, but I know that Dr Koch has had about 5 woman on Kuvan while they’re pregnant. I know that isn’t a huge crowd, but it’s a start and all research has to start somewhere right? All of their babies were born healthy. I would think you would be fine to try to concieve once your levels are back into normal range while you eating your original phe allowance.
    Anway, hope this helps! nBre 16 CPKU

    Avatar of Tara

    Hi Louise,
    I just came back to the diet after being off for about 10 years. I have never had meat or fish or anything, but had basically been eating more allowable foods than I should. Because I am 29, when I returned to the Dr. last week, she indicated that if I were to begin Kuvan and decide to get pregnant, I should stop taking the Kuvan because no one has had a baby while on the drug so far and the effects are uncertain….just wanted to pass along what I heard!

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    thank you both ,
    I think I will just do it the ‘old fashioned’ way – it worked perfectly last time. lol. I dont want to be a guinea pig.
    xx cheers xx

    Avatar of petrina

    Hiya…just wondering how u are doing with getting your levels down??? could really do with a chat with someone who is in the same situation as myself!!I have a handsome ,funny ,intelligent little man of 3 years of age! would love to have another child and really thought it was gonna be easy as i knew what it took to get it down the last time but my levels won’t come down and i am soooo frustrated!my dietition says i am not eating enough!! would LOVE to hear from anyone…as only someone with pku can fully understand.

    Avatar of Philip

    hey louloubell, Do you think you would be interested in participating in My short Kuvan documentary? All of your questions about Kuvan are very good, and I bet a lot of other people have them. It would be a good way to get all of the questions answered, as I am working in association with BioMarin on the project and they could provide direct answers to all of your questions. let me know if you are interested.

Viewing 6 posts - 1 through 6 (of 6 total)
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