Community Discussion Forum New to my gf has pku

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    Avatar of Michael

     my gf has pku, we have been togaher going on 5 years and i love her 2 bits.

    firstly, i have tried to help when she sticks to her diet. she points it out  when she is on the diet and i do what i can but been an non pku individual i sometimes dont take it as serious as she does but  do care and try to help

    an example would be since we have been togather i try to convince her to take her blood (and i have a fear of any needles) and her allouance of protien has went up. she has blonde hair and blue eyes so according to her this affects her more than other pku carriers and can not have as much protien… is this correct?

    i would love 2 get married and have kids some day. we enjoy all you can eat chinese and many times she has ate me under the table :) which does worry me, 2 a point. i am afraid she is hurting her self. but we both enjoy it. we love a good chinese lol 

    i dont know what the point of this post is but any advice would be great.. she loves meat as do i, i would love 2 get married some day and have kids (which scares her because of pku)…. I dont want to hurt her by making her stick 2 her diet if she dosent want too and i dont no if i have the will power to help at times, i cant even stop smoking.

    as a partner of someone with pku advice would be brilliant….

    any really good recipies 2 loli

    ps, i would love to hear from any one in relationsips with kids as well, was it hard are they healthy. i love her to bits and want to start a family some day.


    Avatar of Rachael

    Hey michael

    my name is Rachael and im 30 years old and im from Brisbane QLD Australia and i have pku,

    i can only have 15grams of protien a day, how much protien can your girlfriend have a day? i think you need to get her to stop eating meat as it is  very high in protien. if you have any questions i will be more then happy to try and answer them. well hope to hear from you soon.

    Avatar of Nicole

    Hi There Michael

    My Names Nicole am 28 years old and am From Scotland, UK.  I am only on 6 exchanges and its very low and very hard but i have been doing well with my diet so far.

    My best advice to you is to stop your GF eating meat altogether it is very high in protein and she might not see the damage that its causing right now but it will creep up on her, when us PKU'ers have high blood levels we all seem to ave the same symptoms which is more to do with the brain, Like Anixety, Panic Attacks, Depression, Tiredness, Moodiness, Aggressive, Emotional problems, loss of concentration,  not only that but Sore Joints Tremors, aching Body, exzema, rashs, Can also lead to seizures, Protein is like a poison to our brain. Sorry if u think this is a bit full on but you need to know because everyone i know who has PKU and is not following the diet i try and encourage them to get back on it as there is a warning out there that this diet is for life!!!

    I am a mother of 2 gorgeous girls both healthy and non PKU, Bringing them into this world was difficult and i struggled big time with both pregnancies due to having extreme Morning Sickness, if you want a family and to get married tell ur GF to get on diet now and having children in the future will become alot easier for you both and make planning Happier :-)

    I love chinese food too, most my meals out are to a chinese Restaraunt i save all my protein take when i know am going out and i use it for My Vegetable Curry, Or Vegetable Sweet & Sour with Boiled Rice and also i have Vegetable Chow main and my exchanges go on my Noodles :-) i also order these for a take away and having a nice quiet night in with my fella with a bottle of wine or cider :-) we can still enjoy these foods, and ave also took up the Hobbie of Cooking and Experimenting with LP food and it makes my life a whole lot easier x

    Mail me anytime with any questions x if u have face book theres a great support page on there which is where all us PKU'ers encourage and support each other x

    Nicole x


    Avatar of Taishawn

    hello everyone my name is taishawn cottle and i am from NY and i am going away to college in a little while and wanted to know if any of youguys or girls have experience in college with PKU 

    Avatar of Meaghan

    Pku in college was awesome. Where I went to school it was easy. I spoke with the head of dining services and as long as I had a meal plan they purchased all of my low protein foods and also would supply me with foods to eat in my dorm room. Not all dining services are going to be understanding but I am a commited dieter. I have never been off diet, will never eat meat, and refuse to ever even think about doing so. I am on 5 grams of protein. I was never tempted to eat anything not on the vegetarian line at school so it was a lot easier for me than it will be for your girlfriend. Having access to so much food at the same time can be tempting.

    Your girlfriend is hurting herself if she does not stick to the diet, and it will be harder if she gets pregnant. A woman who is pregnant and not committed to the deit runs serious risks to the baby, including tremors, epilepsy, and mental retardation. This is because when the protein we (PKUers) eat goes into our bloodstream it essentially acts like an acid, this then transfers into the baby through the umbilical cord essentially poisoning the child.

    I would say do all in your power to get her on that diet. She'll thank you in the end.


    CPKU 22

    Avatar of Timothy

    Hi, I'm Jack (that's a pseudonymn by the way) and I'm a PKUer.  (sounds like I'm in AA or something)   Chinese sounds fine if you don't overdo it.  Stay away from meat it is probably the single most protien laden item she could eat.

    On the other hand, I am aware that there are pills one can take which would allow them to eat meat.  If it's really that much of a big deal maybe she can get on those.  Personally I perfer the diet… but I don't really care for meat anyway… I have other non-pku friends who are more extreme in their self-imposed restrictions than I am.

    Avatar of Jordan

    My best advice is for her to stay away from meat, any meat is very high in PHE, I have never EVER, had any meat in my entire life, my PHE tolerence is fairly high, but I refrain from eating anything too high in PHE… you can get a book from your doctor that lists how much phe is in certain food (although I never use it since I eat mainly the same things every day)… if you two are at all planing on having kids, she needs to get her diet under control before you two can even think of having kids or you can run into issues. As for the pills that allow to eat meat, I don't 100% know much about the pills, I think its called Kuvan or something similar to that, but all it does is inhibit the effect of PHE damaging your body, it just increases your tolerence, or helps with pku people who can't have any normal food at all, I don't think it should be used to allow PKU paitents to eat meat, even with the drug the PHE levels in meat are fairly high and could still effect you…

    But I'm not a doctor so don't take my word on that…

    Hopefully she gets back on track and you two live a happy life together!

    Avatar of Becky

     I haven't fully read other people's comments, however I would say that if you want to start a family it IS possible and will be fine if it is something you both want?! 

    I was off diet, and your stories remind me of myself and my husband. When we were 1st 2gether we would also go out 4all you can eat chinese and I would eat as much as he did and sometimes more!

    I would like to say it is her choice if she has PKU then she will know the affects of being off diet. Also if it is the choice she makes, you have to support her.

    If she chooses 2b on diet then you also have to support her with that! 

    If a family is something you are BOTH thinking about, my advise would be to set a time you want to do it and for your gf 2enjoy the time left being off diet as much as possible! My hubby and I decided in Jan 2010 that we wanted 2 start a family! I also wanted 2go 2NZ 2c my Dad, so I went 2 NZ in the March 2010 and then when I came back I found out everything I needed 2about trying 4a baby with PKU! In the June I went back on diet and September 20th I found out I was pregnant!!

    I enjoyed those last 6months on diet to the max and am very glad I did it!!

    Since having my baby i have stayed on diet (with a few straying days) but I do it so that I am the best Mum I can be for my baby! I think about coming back off diet quite a lot, but I think I may do it 4 6months b4 I have my next baby again just so my whole life isn't so absessed with food!! 

    I don't know if this has helped or not….but I hope it has! x x x

    Avatar of Malany

    I know this is really delayed.

    I'm 21years old and have CPKU, I am in a relationship and me and my guy have been together for almost a year now.

    First of all I would like to say that the decision of being on or off diet is entirely up to your girlfriend and I am pleased that you choose to support her no matter what way things go.

    Personally I have been on diet my whole life and have no intentions of going off because I know I want a family and I believe it will be easier for me to get to the correct blood levels if I haven't experinced what I'm missing out on, I also keep to my diet cos I know that my family has a history of addictions etc and I believe that food can be an addiction and I have already noticed that I tend to be an emotional eater, without the restriction of my PKU diet I think this could get much worse for me.

    Anyways, my guy is completely supportive of me and my PKU, and he doesn't entirely get it either, he understands that sometimes I hate the diet (when I want to go out with him but have to walk out of 5 restaurants before finding somewhere I can eat), and sometimes I love it (when I'm experimenting with PKU baking and excited about the prospect of new food and new skills), and sometimes I am just not interested (when I have chocolate cravings XD), and it is also very hard to catch up to an entire life with the diet being a constant factor, i tend to forget that he hasn't experienced the diet forever.

    Anyways to answer your question, your girlfriends Blonde hair and Blue eyes is a big indicator of PKU, however I don't think it indicates how much protien she can or can't have, it more indicates the affect the lack of phe that is being broken down into melanin which helps to provide hair colour and eye colour, most PKU children tend to be Blod haired and blue eyed at first, but as they stick to the diet and in particular take their formula thier hair will colour naturally as they get older, my hair is now a dark blonde, almost light brown from being almost white-blonde when i was little, and my older brothers is a medium-brown that sunbleaches.

    I have to say that having kids tends to be a scary prospect for any mum, it is just more so for us with PKU as we don't want to harm our child by having high blood levels. Heck I am terrified of having kids and I've been on the diet the whole time! But please realise that if your girlfriend gets accidentally pregnant she can go on the diet as best she can and the child can still be healthy at the end.

    Now I realise that you will want to get your girlfriend on diet in order to have kids, but I wan to point out that it won't happen unless she is entirely commited, and if you push her to do something she doesn't want she won't like you for it.

    Lastly, as has been mentions there is now other treatment options, for one there is Kuvan which may or may not work for her, it all depends on the severity of her PKU and if she has some enzyme function, in some people it works and in some it doesn't. i'm not entirely sure why but from what I can gather it is dependant on if her enzymes that break down phe function somewhat or not, and even then it may not work. The company that provides Kuvan allows a free 30day trial to see if it works and then if it does they help to get insurance or some form of coverage for it (at least thats how it goes in the states I'm from NZ and we haven't got it yet), what Kuvan does if it works is it can generally double or even triple your protien intake.

    That same company is also going through the clinical stages of bringing out and Injection drug called PEG-PAL, which brings down phe dramatically, I am not entirely sure on the details, but there is a Blog on here from a lady who has taken part in stage four of the clinical trail and it looks very exciting.

    Anyways, good luck and I hope this has helped somewhat, if you have anymore questions feel free to ask :)

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