Viewing 11 posts - 1 through 11 (of 11 total)
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  • #8186
    Avatar of alesha

    hello all im having an off day…well week…
    just  cant  motivate myself to drink the formula, and man im feelin it…think im going to go make some formula lol
    anyone else have  off days ..weeks…months…and how do u get urself motivated again to get back on track…

    Avatar of petrina


                 hOPE YOU HAVE BEEN ABLE TO GET BACK ON TRACK…I UNDERSTAND AS THIS DIET CAN BE VERY TOUGH. I found taking my medicine ok but sticking to the exchanges really tough…especially when you are out and about with friends etc. Looking at restaurant menus and not being able to eat 1 thing on it can wear one down at times…i have developed a thick skin and ask for off menu stuff.

               At the minute i am very motivated because i am pregnant with twins ! so believe me keeping to the diet is easy when it involves their health…

                Anyway…good luck and hope motivation is your middlename this week !!


    when i was little i never used to drink it, and in the end they had to make me drink it throught a tube up my nose, but now i drink it…. well most of the time.

    Avatar of Nicole

     Hi guys

    Everyone has there off days you are entitled to it as sticking to the diet is very hard!

    Just be strong enough to get back into it though :-) 

    Take care x

    Avatar of Kellie

    Hi Everyone :)

    I am new to and was on the maternal diet for 6 years while having my two beautiful healthy boys and now am trying to keep my levels at a safe level. I was wondering how other PKU adults go about their diet on a daily basis. Do you have your formula everyday and the full amount everyday? How do you hvae your formula? Do you count units or grams of protein or do you just guess?

    Sorry for all the questions I am just really curious how other PKU adults manage their diets.

    Thank you for your help :)

    Avatar of Kellie

    Also meant to say that I have bad days too and sometimes I don't have my formula for a couple of days but then I start to feel really tired and just not myself. I also start to worry about things like getting oestoporosis when I am older and other health problems from not getting enough vitamins and minerals so that gives me motivation to get back on track.

    Batwomen congratulations on having twins!! That is very exciting! How is the maternal diet going? Do you have any other children or is this your first pregnancy? I have two healthy boys. The hard work is so worth it in the end!

    Nicole1982 were you on PKU exchange a while ago? I think I spoke to you on there a couple of times ages ago.

    pkumommy1013 when you said you feel it not having your formula, how does it effect you?

    Thanks :)


    Avatar of Nicole

     Hi Kellie…

    Yeah i was on PKU exchange.

    When i don't have my formula..  I get tired and sore legs for some reason.

    nicole x

    Avatar of Roisin

    i have had plenty of off days and i dont notice a difference at times, although i do feel better when im on track. i get motiviated when i just think to myself  'this isnt good for me.'  i find it easier to stick to exchanges than taking the drink. 

    i find it harder to stick to the diet when people close to me ask so many questions, trying to understand it, or suggesting what i could have for my dinner when they tuck into their meaty meals.  i dont like the attention. i would prefer to let everybody enjoy their meal, and i cook my own later.  i know they are trying to help, but i dont like the questions


    Avatar of Nicole

    Hi Rosh.

    What type of PKU do you have?  I have severe classical which really means i am very sensitive to high levels of PHE thats probs why i notice the difference in myself and why others do!

    Avatar of Hunter

    Hi Everyone-

    I am new to, and am excited to meet people going through tht same things I am! 

    I was on NeoPhe for aabout a year after really struggling with my diet during college. I really could have cared less if I ate right because I couldn't tell a difference in how I felt. I wanted to eat healthy like my friends… with whole grains and lean proteins and little carbs… aka the opposite of a PKU diet. When my levels are low I am able to compare and see that I feel better than before… but when my levels are high I am in a fog and I don't seem to notice or sometimes even care. Looking back I slept a LOT and had REALLY bad headaches… so obviously I felt different, I just didn't notice or… maybe didn't want to notice.

    But as of the last few months I have come back to the old diet from when I was a kid, Nicole1982- I, too have severe classical PKU which gets frustrating because sometimes 10 exchanges seems impossible to follow and not be starving. Thankfully I have found out about SO MANY products recently that have made this transition easier. I am also studyign to be a dietitian so I was concerned about the overall nutritional content of all of the LoPro products (fiber, carbs, transfat, etc) but I am finding more and more products that are nutritionally balanced and taste GOOD so that too is encouraging.

    Back to tough days though, I have been really good over the past few weeks especially and the other night I was out to pizza after a halloween party with my friends. I just sat there while they DEVOURED their pizza and calzones like they were never going to eat again, and I just got angry and sad and broke down later that night— WHY ME!? These people don't have to worry about what they are going to eat or how much, they are hungry: they eat. IT SUCKED!!! But in the end, I didn't have any pizza or anythhing and went home and got myself a snack, and my boyfriend let me vent and let it all out. I am reminding myself t's OK to get frustrated about this diet because it is a huge undertaking… but it can be done! 

    I think the motivating factor for me is that my high levels affect other people if I am moody or tired or have a headache, and more importantly if I want to have kids one day, I will need to have this tight control. I find when my levesls are lower it is easier to not cheat, but one cheat leads to 2 to 3 to 4 and then I am a few days down the line wihtout formula and all out of whack and think 1 more won't hurt. It is a vicious cycle… but so far I have broken it! I hope to keep it up, and am happy I found this forum to share. Sorry for the rambling I am just so pumped to have people to share all of this with, people who understand !!!! 

    Avatar of Nicole

     Hi hlr26,

    Your not alone, everything in your post sounded exactly like me, only difference am only allowed 4 exchanges!!!  It is very hard to control this diet, its like a weight loss diet you get bored and then you cheat.  I get bored on my PKU diet and cheat and 1 does lead to another and another and then you soon realize your back to square one.  

    My motivating factor is also about high levels and how it affects my loved ones specially with my 2 little girls.  I am doing this diet not only for myself but for them.  I cant be that moody, short tempered, no energy or time for them when am off diet.

    I think its great your studying to become a dietician, and determined not to let PKU get in the way, like PKU got in my way and stopped me from doing things i wanted to achieve in life! 

    Where are you from hlr26


Viewing 11 posts - 1 through 11 (of 11 total)
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