PKU.com Community Discussion Forum Adults and PKU 26 years old and returning to diet after 5 years.

Viewing 15 posts - 1 through 15 (of 19 total)
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  • #8875
    Avatar of Loops
    Loops
    Member

    Hi there,
    Im Louise and this is the first time I have posted on this forum.

    I started the PKU diet – meds  at birth and stayed on until the age of about 16, Then I went off the rails – and ate normally  – had no meds.
    At 20 I became pregnant and went straight onto the diet. Everything was fine – by son is healthy – and I found it very easy.  However after his birth – I lapsed straight back into a normal diet. Then – I went onto KUVAN for three years.. It worked well…. and have just stopped taking it.

    Now I want to go back onto the diet like when I was pregnant / a teenager. I want my concentration back as I am about to begin a PGCE. I know it is going to be really hard… I dont eat a lot of meat … but Its the silly things like milk and bread – that I have become used to. I also have a thing about seafood — whoops.

    So – I am wondering – is there anyone else out there who has already – or is planning to go back on the diet? I will probably be on around 12 – 15 g of protiend a day. I have forgotten everything… it would be good to chat with someone in the same situation.

    ta lou xx

    #8877
    Avatar of lynsey
    Lynsey23
    Member

    #8878
    Avatar of lynsey
    Lynsey23
    Member

    hi im lynsey im 23 yrz old

    i konw exacly what u mean cuz i havent been off the pku diet 4 13 yrz properly it is very hard 4 me cuz i have got so use 2 eating anything i want you name it ive had it and now that i have been wiv my partner 4 8 yrz we wnt 2 strt a family ASAP im trying 2 strt the diet as quick and stricked as it should be im just waiting 2 hear frm the hospital 2 talk 2 them about this ASAP plus after i have had a little baby im wanting 2 stay on the diet as best as i can .

    last yr i did strt the pku diet properly and everything was going so well i got 2 the stage that my dr was just about 2 say we can strt trying 4 a baby and i rang the pharmacy up 2 see if they had my pk cooler in ready 4 me which i order 3 weeks b4 this happend and they sed no its not in yet i wos so upset and hurt that i gave up so now i get my pk cooler dilivered 2 my door every month i have no worries now so hopfuly everything gose very well and my baby is healthy thats all that matters 2 me and my partner.

    #8885
    Avatar of Nicole
    Nicole1982
    Member

    Hi Louise & Lynsey..

    I am Nicole am 27 years old and i have classical PKU, I know exactly where your all coming from!!  I have 2 gorgeous girls, and now am struggling to get into routine with low pro diet.  I desprtely want to get back onto my diet because it makes me feel 1 million times better.

    Did you girls have any syptoms when being off diet soooo long…???

    Today is a new day….Started the diet and all is going well so far!!!

    Nicole x

    #8886
    Avatar of lynsey
    Lynsey23
    Member

    hi nicole

    yes i found myself getting very depressed and very bad mood swings plus i felt like my inteligents was slowly slipping away the mood swings can be so bad that i take them out on my partner after i always feel so upset for getting mad at him 4 no reason also i get very emotional sum times wiv the slightis thing i hate being like this i seem 2 become a nasty person i hate it this is the reason y i want 2 start the diet properly i just want a good quite life wiv my partner and have a baby wiv him i must admit i am very scared because incase anything gose wrong but i guess i cant think that way and try 2 thing positive i am trying so hard 2 2 stick 2 the diet but its like my family say 2 me if i want a baby so badly i CAN DO IT! and i no i can .

    I think the hardest part of trying to start the diet again is the very begining because ppl like my and urself wiv classical pku feel like its unfare and like we r missing out out on alot of things but once you have started the diet and been on the diet 4 about a month or two you can just saile throw it like uv never been off it.

    i find it more easyer 2 control the diet when iv been on it 4 a while i just hope that i dont get teppted 2 eat anything i shouldnt wen i get pregnant .

    did you ever get any cravings wen you were pregnant and did you ever get cravings 4 food you cant eat ?

    #8887
    Avatar of lynsey
    Lynsey23
    Member

    dose any one no about weight issues loseing abit 2 putting alot on ?

    if your big then how can you slim down?

    is it a bad thing putting weight on rapidly ?

    because i got told that wiv pku were not ment to work out at all do no y but it sound silly i thort that were ment 2 keep healthy n fit? if you wish 2 send me a friend request plz do so i will add you i would send you friend request but i dont no how srry

    #8889
    Avatar of Keith
    Uncleteef
    Member
    Loops wrote…

    nHi there,
    Im Louise and this is the first time I have posted on this forum.

    I started the PKU diet – meds  at birth and stayed on until the age of about 16, Then I went off the rails – and ate normally  – had no meds.
    At 20 I became pregnant and went straight onto the diet. Everything was fine – by son is healthy – and I found it very easy.  However after his birth – I lapsed straight back into a normal diet. Then – I went onto KUVAN for three years.. It worked well…. and have just stopped taking it.

    Now I want to go back onto the diet like when I was pregnant / a teenager. I want my concentration back as I am about to begin a PGCE. I know it is going to be really hard… I dont eat a lot of meat … but Its the silly things like milk and bread – that I have become used to. I also have a thing about seafood — whoops.

    So – I am wondering – is there anyone else out there who has already – or is planning to go back on the diet? I will probably be on around 12 – 15 g of protiend a day. I have forgotten everything… it would be good to chat with someone in the same situation.

    ta lou xx

    I have been off and one since i was about twelve and have been trying to get back on the diet but there is no support here for me. My body is already feeling the effects of being off of it as i have been off of it for a lot longer. the longest in my 15 year streach has been 6 months. My protien intake though is or could be around the 30 plus range. That is with the milk/formula that we are to have. So i know exactly what you are going through as i am there myself.

    #8890
    Avatar of Keith
    Uncleteef
    Member

    I would have to say that i am a lot of muscled the only problem i have is the mid section. I think it is bad to have a lot of muscle with PKU as i can see that where most of my msucle is the PKU is effecting me the most of course i have been on and off the diet for a very very long time. I also would have to say the only bad thing abotu me being on my PKU deit i had way to much energy and couldnt sleep at all.

    I just have a problem drinking the milk/formula every day as i am not to fond of it.

    #8898
    Avatar of Nicole
    Nicole1982
    Member

    Hiya Guys…

    First of all…..

    Lynsey – i do understand about your mood swings etc with your partner because i do the same! when am not doing so well on my diet and levels are high i culd just turn on my partner ave a big row then i would sit upstairs and wonder what the hell was that all about  Its almost as if it was rage or summit,, feel very aggitated at times along with moodiness and anxiety, headaches, sore body.  Although your wanting to have a baby, this is summit that you and your partner can work on.  Let him help with controlling your diet, get him involved.  what i did when i planned my second baby, i put a scan photo on my fridge of my first baby to remind me everytime i went into the fridge to eat summit that wouldnt affect my chance to have another baby.. It did work!!!!

    About the weight issue….. I am little over weight myself, i think due to all the high sugar drinks that i drink, but sticking to a low protein diet shouldnt make you overweight…the totally opposite i think to be honest..

    Uncleteef  – i know exactly what you mean about being on PKU diet and having loads of energy, i am the same!!!

    I hope you both get on track with this low protein diet because its for our own health x

    Nic x

    #8901
    Avatar of lynsey
    Lynsey23
    Member

    ellow ppl

    yer you are so right there nicole the thing is that i dont have any children of my own yet this would be my first baby when everything is ok .

    i am hoping so much that things dont go wrong but how can i get my partner in volved because if i talk about us n wanting a baby he says to me he cant talk about it cus its hurting him to much to dont want to talk about it i can understand when  he says that because its hurting me too infact i feel like crying because its hurting us both.

    me and my partner love each other so much that he knows when iv get what he calls baby fever lol

    pluse i no when he gets it too.

    i no i can do it cause im starting it pku diet straight away when my pescription is ready to by picked up frm the phamacy i cant waite cus im GUNNA DO IT I CAN DO IT im so determin to do it for a baby!!!

    dose any 1 no how to add ppl to there friends list plz let me know thank you.

    #8905
    Avatar of Keith
    Uncleteef
    Member

    Hey guys its me again. I am pretty ticked right about now because i jus found out i wasnt going to get disability. I have pushed myself all my life to be normal and just to fit in with the crow but I now know i cant.

    I seriously cannot work like i should be able to with the tremors and the stress causing problems. The stupid state tries my mental capabilities and looks at a bad knee and a pinched nerve. They dont try to put me under stress or anything like that or even in a crowded room where it might actually show them something. I am acutally sitting here angry very very angry and it is hard to make me this mad and when i do get this mad i need to hit things which is probably one of the reasons my right hand always hurts. That and the tremors that are in that hand.

    I mean seriously what can a doctor see with out checkign the nervous system in my body when obviously that is what is wrong with me.

    Sorry just need to vent a bit. Also sorry about the two different types of typing not used to this yet.

    #8955
    Avatar of Timothy
    JackofHearts
    Member

    Actually I think it is a good thing to work out even with PKU, if you increase your intake of formula, you will be able to roll with it pretty easily, and it will probably help you sleep as it would use that extra energy you have.  I actually weightlift and I am doing great with it.  I just treat the formula as I would a protien drink and slug it like its water. 

    If I were you, I wouldn't try to fit in with the crowd,  granted you have PKU but you don't have to define yourself by it.  You don't need disability to be successful.  Think, you're the man, and you can make it happen anyway.  

    #8972
    Avatar of Keith
    Uncleteef
    Member
    JackofHearts wrote…

    nActually I think it is a good thing to work out even with PKU, if you increase your intake of formula, you will be able to roll with it pretty easily, and it will probably help you sleep as it would use that extra energy you have.  I actually weightlift and I am doing great with it.  I just treat the formula as I would a protien drink and slug it like its water. 

    If I were you, I wouldn't try to fit in with the crowd,  granted you have PKU but you don't have to define yourself by it.  You don't need disability to be successful.  Think, you're the man, and you can make it happen anyway.  

    Oh trust me i have triedbut it seems as of late i have been getting worse over the years. Just recently i have trouble in big crowds and at work they wanted me to talk to customers and there were like 6 people around. I got so nervous and red that on the right side of my face it felt like it was buning up to the point where it was worse then a sunburn. trust me i would know. There are some thing i can and cannot do and being stressed out like that makes my condition worse.

    #8994
    Avatar of Eugene
    Eugene
    Participant
    Uncleteef wrote…

    JackofHearts wrote…

    nActually I think it is a good thing to work out even with PKU, if you increase your intake of formula, you will be able to roll with it pretty easily, and it will probably help you sleep as it would use that extra energy you have.  I actually weightlift and I am doing great with it.  I just treat the formula as I would a protien drink and slug it like its water. 

    If I were you, I wouldn't try to fit in with the crowd,  granted you have PKU but you don't have to define yourself by it.  You don't need disability to be successful.  Think, you're the man, and you can make it happen anyway.  

    Oh trust me i have triedbut it seems as of late i have been getting worse over the years. Just recently i have trouble in big crowds and at work they wanted me to talk to customers and there were like 6 people around. I got so nervous and red that on the right side of my face it felt like it was buning up to the point where it was worse then a sunburn. trust me i would know. There are some thing i can and cannot do and being stressed out like that makes my condition worse.

    nHeck when my symptoms get bad I can't even drive a car or even be a passenger in a car without having a headache and feeling a tingle that starts on the right side of my face and then my left arm goes numb. Then the dizziness and confusion that occurs. One time I was drving alone and I made a wrong turn and got lost. I had no idea where I was. Sometimes I watch TV and all the sudden… Its the end of the show and I don't remember being sleepy before or after the event. I can put something down or give something to someone and 15 seconds later I don't remember what I did with the item.

    I am still working though.

    #9067
    Avatar of Loops
    Loops
    Member

    Thank you for all of the replies guys – it is all really interesting stuff.

    I was back on diet until 2 weeks ago – thne I went on holiday and it went out of the window. I did not take the Lophlex with me – and starting eating rubbish again.

    Now if I tell you honestly how I feel =

     bearingin in mind I have had the food poisoning! – ( seafood!!!! – serves me right))

    But what I think is PKU related:

    I ache EVERYWHERE… even my eyes – its like I have been kicked in both eye sockets.

    My head is cloudy and I cannot concentrate on anything for too long.

    Ive had a headache ( dull – but there) for the last 5 days

    I have not left the house, or got dressed for about 5 days – dont wanna speak to anyone.

    I keep shouting at my son and my partner

    I keep crying and thinking stupid things like people  I know are going to die / the house buring down etc

    I have no appetite

    My hands are shaking

    My eyesight is that of a very drunk person!?

    and I am sure it is all related to my high PHE….

     I am off to have my first Lophlex iin a while…. I will be back on in a couple of days to tel you how I am feeling.

    xxxx

    and i look like death warmed up.

Viewing 15 posts - 1 through 15 (of 19 total)
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