Hi my name is Celina. I am from Ireland. I am 35yrs of age and i have recently got married. I am now planning on having a baby. I was never very good on my diet but now i am very strict on it and my levels are low enough to start trying soon. My question is can anyone with pku who is trying or has had a baby tell me their expereinces of their pregnancy. If they found it difficult or sailed through it. Also i would like to hear from anyone from ireland too as their is no website set up for irish people.
im 25 and from dublin ireland too.
I am also on strict diet as im trying to conceive at the moment. nMy levels have been between the 150 and 250 mark since march so it hasnt been too bad they were too low for a couple of weeks and im onow on 16 exchanges. Last level was 241 so if its any higher this week ill have to go down to 15 exchanges i think.
How are you finding it i found it hard at first becuase since my early teens i hadnt been great on the diet i never came off it but wasnt strict at all. But now over the last few months its gotten easier and the bread is much nicer now than when i was young.
Im lucky cos i have mild pku and have always been allowed a good few exchanges.
Id love to hear from you again as we have so much im common.
Hi Celina, nMy name is Kate and i am from Ireland too. I am 34 years old and also trying to get pregnant. I was diagnosed with PKU at 2 weeks old, but have been off the diet from i was 6 months old, so i have never really had any experience with PKU until now! I decided to research a bit about PKU as my husband and i are trying to start a family and “maternal PKU” came as a bit of a shock to me. I have never been given information regarding this and seem to have slipped through the net somehow. I haven’t had my levels checked in 23 years! and didn’t even know how to go about it, but luckily i found a metabolic clinic and a spcialist, who was just as shocked to hear from me! I am just waiting to have my levels checked and then take it from there. I wish you all the best with your diet, hope you fall pregnant soon, sail through your pregnancy and have a healthy, happy bouncing baby! nAll the luck o’ the Irish! nK x
I am 29 and I am just thinking about starting a family. I have an appointment with temple street hospital in August and I am hoping that I will get all the information I need there. Where are you from in Ireland? I am from Mayo. I have been on the diet since I was born and I have never really come off it thank god. nKeep in touch and if you would like I can pass on my personal e-mail so we can talk more about this. nOrla
Im polly smith. I live in england in the south west. I am 20 years old and im engaged. Me and my partner really want a baby. I have a little sister who is 15 also with pku it makes it easyer to have someone with pku we are very close shes my other half. But we are the only two living in the south west and i have no one to talk to about planning a baby. I would like to talk to some one that is planning to have a baby and some one who has had a baby to let me know what to exspect. Iv had a appiontment with dr webster and iv been planning for 2months now iv kept in the 100-250 range all this time but im still nervious tho. I do my bloods twice a week till im pregnent which ill have it done 3times a week and ill have a deep blood vain test once a month. I would love to talk to some one any one and also have a friend. hope to hear from some one soon.
I am from the north…originally from Belfast and now living in Lisburn. I am presently waiting on the results of my levels, hoping they will be back by 2morrow! A bit nervous and stressed at the minute!!!!!!! I don’t know anyone else with PKU as i am the only member of my family who was diagnoised with it. My consultant is pretty confident that my levels will be normal as i have never really been on the diet and have had no problems so far, she thinks that i must have very mild PKU. Personally i think it may have been a misdiagnosis, i believe that i had an under-developed liver when i was born. (or maybe that is just wishful thinking!)But my levels were never high from i was 4 months old until i stopped gettiing them checked at 11 years old. I had what they called a “protein push” when i was 6 months old, when they pumped me full of protein and my levels remained low, thats when they stopped the diet. I suppose i will find out 2morrow! Keep in touch and let me know how thing go, wish you loads of luck! K x
Results in, levels high, need to start the diet! Misdiagnosis was definately wishful thinking. K x
Kate, nGood luck with getting back on diet! I hope everything works out! Also, if you want you can go to pkuboard.info there are alot of adults there who could really help you out. One of the members there is pregnant at the moment and some of the others have been of diet and are now back on.
What was your level at if you don’t mind me asking? If you haven’t had any effects from being off diet it might just be that you have mild PKU. And just so you know as far as I know you can’t be misdiagnosed because of a underdeveloped liver. It’s not actually the liver that breaks down Phe it’s an enzyme in the liver so how developed your liver is really has no effect on that…sorry if I’m not making much sense. nBreanna n16 CPKU
levels were 258, not too bad considering i have eaten everything i want for the last 34 years!! I am keeping a food diary at the minute and seeing a dietician on Monday to see how i can change my diet, i didn’t realise how bad my diet was until i started keeping it!!!! It is actually embarassing! The canteen in my work don’t really cater for healthy eating…..and i work in a hospital!!! The “misdiagnosis wish” was clutching at straws i think, hoping i didn’t have to give up my T-bone steaks! Will know more by Monday. What would really high levels be? My consultant said i need to take them down below 250 for pregnancy. I really know nothing about PKU. I have had blood sent for DNA testing, and also sent some on my husband. Will get my levels checked again on Monday. K x
Levels are supposed to be 2-6mg/dl (or seeing as you count in umol/l it would be 120-360umol/l). Except when your trying to get pregnant your levels have to be even more controlled so it is easier to keep your levels down. So right now your level is pretty much perfect! Keep up the good work! nBreanna
levels now down to 196 k x
I am really happy that you levels were so low but I think you must have a very mild form of PKU, I have never been off the diet and I am pretty good at keeping to it but my levels have gone as high as 1000 and over that was last year, this year thank God my levels are between 300 and 500 which Temple Street are very happy with.
I was up with them yesterday like you my husband and I are thinking of starting a family so I now have to get my bloods down between 150 and 250 and keep them at that level for three months. nThey have made a few changes to my diet I am now on 4 exchanges instead of 5 and I have to take an extra drink of Lowphlex in the day.
I have to start sending my bloods ever week and they will keep and eye on them for me and let me know if I have to make any more changes to my diet. nKeep in touch and let me know how you are getting on.
13 weeks pregnant, and levels have kept below 250, but are on the increase at the minute. everything going well at the minute, had a scan last week and all is ok. k x
Polly- Hello. I am a mom with pku I have three wonderful children. My levels during pregnancy were all within the recommended range. occasionally lower than recommended. nYour levels sound really good. I am sure you will do well with pregnancy. Keep doing your best and I know the out come will be worth it.
My name is Michelle and i am from Tipperary. I am twenty nine years of age. I have been on my PKU diet since i was born but have not always stuck to it. My brother also has PKU since birth and he is now doing a masters in U.L. Six years ago i had an unplanned pregnancy and my levels were high when i conceived, so i spent most of my pregnancy in The Rutunda and Clonmel hospital. Luckily Keeva was born a very healthy little girl and she does not have PKU, thank god. I got married in September this year and i am now planning another baby so i am trying to get my levels down to 200. I am hoping this pregnancy will be alot smoother than the first as i am planning it and really trying hard to stick to my diet. Would like to hear from ye as it would be nice to be able to talk to other woman with PKU!!!