I can't control my PKU at age 27

I can't control my PKU at age 27

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I can't control my PKU at age 27

August 2, 2009 in Uncategorized

Hi my name is Jenn, Im 27 and I come from Glasgow in Scotland. I have been on diet for all my life... if you could call it that. I suppose Im more off it than on it as Im terrified to admit to myself that I am actually not on diet. The major issue I seem to have is that I cant stay on diet for any length of time despite knowing what the high levels are doing to me. I manage to eat the correct foods for a few weeks then I get bored and end up eating what I want. I have just been on holiday for 2 weeks and took PKU food with me and the only thing I managed to take was my maxamum for 2 days. Everything else I ate was normal food. I dont want to be like this, I want to control my PKU, as I stand to lose alot if I continue the way Im going. Im trying all avenues to find some advice or help with being able to stay on diet properly for more than 3 weeks. If anyone has any pearls of wisdom or has been where I am at just now and got control I'd love to hear how you managed it as I am at my wits end now and have run out of will power.

3 Reviews of I can't control my PKU at age 27

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hi Jenn… I used to be very inconsistent with taking my formula… I hear your frustration that you know what you are doing is wrong and not good for you, but yet – you still do it anyway! The food part of PKU was not an issue for me, however here are some things you might want to try that I have heard other people with PKU suggest -

    - cook on a free day (let’s say sunday) and make enough food to last for a few days.. you then can just heat up whatever you are in the mood for rather than cooking from scratch…

    - start with picking 2 days a week that you can eat whatever you want (even if it is not low-pro)… if that is hard than dedicate 3 days… Ideally, you want to eventually get to just 1 day a week…

    - Think of this as a diet and you are trying to lose weight… make REALISTIC goals for yourself… don’t just completely stop yourself from enjoying the foods you like – because it won’t work!

    I hope some of these tips are helpful for you… best of luck :)


  2. Registered: Jul 11, 2009

    Posts: 0

    , Ohio

    Hi Jenn… I am 15 and I have classical PKU, my little sister (almost 10) also has classical PKU. I have been having some of the same problems also. It is becoming really hard for me to control my diet and formula too. I have eaten things that I know I shouldn’t have and my last several levels have been around 22.5, which I know is really bad for me. I do some of the same things you mention, I eat “my kind” of foods for like a week then get bored, one of my favorite foods that isn’t “my kind is the Chicken flavored Ramon Noodles. I know I shouldn’t eat them but I do anyways. If you are willing to, you and I could try and give each other moral support while we try to get, as my dietitian puts it, “back on track”. One of the worst parts of my diet life is that because there are two of us with PKU in my house we don’t always have enough money to be able to order what we need, I find that when we are low on PKU foods, I tend to go more off diet. I would love to be able to help in some way…. Good luck to both of us…. but Mostly to you….. Callie 

  3. Registered: Jan 16, 2011

    Posts: 0

    Milwaukee, Wisconsin

    Hi Jenn…. I have been having some of those problems also. Expect for instead of staying off diet, I stay on diet. See my doctor said that I need more phe in my diet so he took me off my diet for 9 weeks! But things arent turning out. I am staying ON my diet, instead of OFF my diet. and my doctor is getting mad

    OH and I am 12 years old… If you didnt know… lol

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