Pku Board

Hi Paula,

I know exactly what you mean and I am going to comment on my own experience.

I was pretty young when I married my husband and to me it wasn't really an issue, so I didn't even consider it being an issue for him. But I have a 4yo son and I was married for 14 years before he was born and it is because I was always a bit scared to actually do the maternal PKU bit and I was guenuinelly scared if something was wrong it would be all my fault, or my husband would feel it was my fault.

I did surprise my husband with the news I was pregnant, but at the time he said he would never blame me for something like that.

I honestly feel I waited so long out of fear and I still feel lack of support when doing maternal diet. It is a really huge responsibility for us but it can be a positive experience too. I thoroughly enjoyed my pregnancy!

Raelene

i am 22 and i am certinly not ready for a family. i never even new it was possible till a few years ago. and when i leant it was possible it was a dream come true. i have always wanted children. but yes i am scared. my partner cole ( we have been together 3 years) is very supporitve and he nos how scared i am. all we know is we dont want any right now , we have to many plans right now. but every now and then friends will ask us , and i never no what to say , sometimes i just say maybe one , one day, to experiance carrying his baby and being a mother, creating a life that is the best of the both of us. but the diet scares me so i think of adoption. all i know is there are many children out there who need a family and a home and we have alot of love to give. i think if it ever comes down to it. i think i could do the diet when im good and ready, but i think i may only do it once and then adopt. but then i think if i can do it once maybe i can do it again, but then there is always the risk with every pregnacy that something may happen so then i get scared again. so u see im very undediced but thats ok cause its not our time.

hoep that helps alittle.

I don't worry too much about MPKU. When I decide to have kids I think my diet would be much different because I would no longer be following my diet just for myself, but my baby as well. I'm not too worried because I've talked to TONS of women who have completely happy, healthy kids.

hi everyone

i havent been on here in ages. Have had a busy year had a beautiful baby girl in april she is healthy and perfect.

diet wasnt as bad as i had expected but have to say i was terrified from day one even though i had my levels down in the ideal range before i got pregnant and all the way through but it was well worth it and next time i will know not to stress as much

i think worst part of diet was befor i fell pregnant i had spoken to my dieticians in jan 07 and they gave me go ahead to start trying to conceive by march however i didnt fall pregnant until august 2008 so it was a long haul in that sense but again well worth it.

claire

Hello Claire,

congratulations So your baby girl has no PKU?

What were your levels mostly during pregnancy? In Germany it is recommended to have levels under 6 mg/dl.

What was your daily phe amount during the begining of your pregnancy?

Greetings
Kathrin

Hi Kathrin

I forgot to mention that no she doesnt not have pku, we were delighted although I was more concerned about effects of any high phe levels on baby than he/she being born with pku. Luckily she is healthy perfect girl with no pku.

I was on 11 exchanges before I got pregnant then it gradually rose throughout the pregnancy until I had 33 exchanges at one stage near the end. I have fairly mild pku because I know some women have only 1 or 2 or even no exchanges at start of pregnancy to get their levels right.

My blood levels had to be between 150 and 250 not sure what that is using the other way of measuring it. Although dietician seemed to prefer them to be nearer the 250 than the 150 as I think it is as important that they dont get too low which I was surprised by as I thought the lower the better.

Dietician told me medically they need to be between 120 and 360 this is what is classified as optimal control in pregnancy but they like there to be some lee way so that if they change up or down it is easier to stay in control.

I did my levels every monday and thursday morning and had results the next afternoon.

My levels were fine usually between 200 and 250 all the way through. I remember having two levels that were higher one was 300 and one was 315, I think it was because I was doing too much or not getting enough calories but they were back down then straight away.

It was stressfull i used to be very nervous waiting to hear that my levels were ok but well worth it in the end.

When My husband and I were dating I told him that I could not have children and he was ok with that, then. We have after 12 years of marriage decided to contact a PKU specialist and discuss the possibility of getting pregnant. Still working on getting my levels down to the optimal level 6 mg/dl or lower. My doc even stated this last visit that if I could keep my levels around 9-10 he would go ahead and authorize getting pregnant. I was scared til I started seeing the specialist. He actually stated because of our diets we typically have healthier babies. I am excited, but not reall close at this point.

Hi,

that sounds good, so you can start soon What do you think, when will your levels be around 6?

That is exciting that you're beginning the process of getting pregnant, however keep in mind that the safe range of phe levels is 2-6 mg/dl.

Typically when women who have PKU are pregnant their babies receive 1.5 times the phenylalanine that their mother is taking in. This means that if the mother's phe level is 2 mg/dl the babies level will be 3 mg/dl. If the mother's level is 4 mg/dl the baby will have a level of 6 mg/dl. This is why most doctors recommend that women with PKU who are pregnant aim for phe levels between 2-4 mg/dl. This way even if the mothers level is right at 4 mg/dl the baby will still have a safe level of 6 mg/dl. Generally the lower the level the better!

If your phe level is 9 or even 10 your baby will be receiving a level of 13.5 or 15 mg/dl which is definitely way to high! When phe levels are this high for an extended period of time during pregnancy this is when doctors start seeing issues in the baby such as microcephally (small head), low birth weight, congenital heart defects, and possibly mental retardation. I don't mean to scare you. I just wanted to spread accurate information and let you know that if you want to have a baby your levels really do need to be much lower than 10.

Take care, and good luck to everyone who is trying to get pregnant!