update

update

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update

January 4, 2012 in Uncategorized

Ok boys and girls. I didnt do something crazy like go ahead and make a new year's resolution to blog more I just thought this might be fun. I have never kept a blog before so this might be something I like, or hate. Lets start with an introduction. My name is Carrie. I am 29, live in Ontario, am married and have 2 gorgeous children, a 3 year old boy named Lawrence and a 14 month old girl named Hope. I have classic PKU and was diagnosed at 14 days. Currently I would say I am very nearly NOT on diet. As most PKU moms know, there is usually a lul after giving birth where you lose energy and motivation to keep good control of your diet, especially while sleep deprived and caring for a new baby. This is a phenomenon I have called "Post-partum PKU" and one day, when I am looking for something to blog about I will explain my 2 experiences with this phenomenon. Essentially, for about 14 months I didn't take formula or do blood tests and didnt weigh or measure my food. While I didnt eat meat I did eat real pasta, bread and cheese. I would estimate my intake between 30g and 100g of protein a day. My day to day intake fluctuated drastically and was never consistent. I kept belaming this on being too busy and too focused on my kids and family, which is true though it is a crap excuse. I was not determined to do anything until I started noticing some side effects that I could no longer attribute to having kids and just being tired. My speach would mess up, tripping over words or reversing them. It was much harder to control my dyslexia, I was scatterbrained and could not notice at work. So a call to my clinic and a new plan of some formula, a high phe intake or 15g of protein, an attempt for 4-8 weeks of maintaining phe levels and then I should be able to go on Kuvan. I am really excited to try it and see what happens.

1 Review of update

  1. Registered: Jun 3, 2010

    Posts: 0

    Heilbronn, INTERNATIONAL

    Hey Carrie,

    this is a good New Year’s resolution :) Hope to read more from you soon.

    So have you already started with a low protein diet again? I’m struggling too and I try my best, from day to day. The point is, once you started eating all the “normal” stuff, sometimes you don’t even think about the foord you’re going to eat is high protein :( That’s how far it’s become with me now :( But fortunately I stick to the low protein bread and pasta and I rarely eat cheese and meat. So it definetely could be worse.. *positive thinking* What I need to get straight is the REGULAR intake of formula. I tend to forget it, so I sometimes take it only once a day, which is really bad I know.

    What is your plan now? What kind of formula do you want to take? How many gramms do you need to take per day?

    I’m looking forward to read you soon :)

    Love,
    Katie xxx

    http://thepkutreasurechest.wordpress.com/

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