New to PKU.com

New to PKU.com

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New to PKU.com

July 2, 2011 in Uncategorized

My name is Katrina and I'm new to PKU.com however I'm definitely not new to having PKU. I am 39 and have 2 kids. neither of them have PKU. I was in the first initial research done in IN. I was caught with PKU at 11/2 weeks old. My mother did a fantastic job at taking good care of my diet and through my elementary years I took my formula to school and drank it at lunch. I mixed it with 1/2 cup strawberry quik just so iI would drink it. I also tried chocolate to but it didn't turn out well. So, I got all kinds of questions from other kids at lunch time every day. Questions like "What is that?" "What does it taste like?" "Why do you have to drink that?" and my favorite question "Why is it so pink?" I could have lied and told them I was allergic to foods high in protein but I didn't because I grew up hearing and believing that I was special because of my PKU. I didn't mind telling them the truth because having PKU is what makes me ME. And I wasn't embarassed or feel bad because I could't eat like everyone else. As I moved on into Jr. High and High School I didn't follow diet as closely. What used to be kinda cool to be different in elementary changed as I got older to I begin to feel it important to fit in more than appear different because of my diet. So, I ate a lot of what everyone else ate. Looking back on it today, would I do things the same ? No, Definitely not. I would have stuck it out with my diet because now I can see how much I just made it harder on myself by denying what I have and what is required to take care of it. If I 'd have known then what I know today I would have just been me. It wouldn't matter to your real friends. We're all made the same but yet all have things about ourselves that are different that's what makes us each unique and exciting. So, just bcause you have PKU doesn't mean you can't have a really successful and happy life. I got married at 23 to my high school sweet heart and and he knew about my PKU from the beginning. The time that I was pregnant with my kids was the only time I was actually able to get levels really low and keep them there. I didn't know if it was possible. I had a high risk OB that specializes in PKU pregnancies. She was wonderful she was always really on top of things. Neither one of my kids have PKU. However, they are both ADHD. One more hiper and the other more attention but they're both healthy and that's all that matters to me. I was taken off diet when I was aroud 11 or 12yrs old. The dietician told my mother to do a phe level before and after this time I was off diet. The time I was off diet was a couple of months but definitely long enough for to get a taste of everything that wasn't good for me. At the end of that time frame we did an ending level and my dietician told my mother to put me back on the diet. There was only one problem with this, it was really hard to go back to diet. I've struggled with it ever since that time. I continue to even today. Now I just want to help or offer support to adults or teens or mothers dealing with PKU. Being caught with PKU within the first year it was discovered I have to say teens and children have got alot more options available to them in helping to manage PKU. I didn't have all the options available now and neither did my mom. They didn't know hardly anything about PKU then. It was definitely even more scary back then. Looking to find friends and others I can help dealing with PKU and to find friends with PKU to support each other. '

4 Reviews of New to PKU.com

  1. Registered: Jun 17, 2011

    Posts: 0

    Llandeilo, INTERNATIONAL

    Aled said on July 6, 2011

    Cracking post, i too am 39, i do not have PKU but my 2 children have. Good to know a “from life” experience really beneficial.
    Thanks & Cheers
    Al

  2. Registered: Oct 31, 2006

    Posts: 0

    Taylor, Michigan

    katrina

    i was reading your blog and as i was reading it i was just in aww because i am 22 and i was kinda off the diet as well when i was in high school because i had a hard time with my lunches and i like you You reminded me so much of me and now i am back on the diet fully and i feel alot better for it i am sure that you know that Did you try kuvan ? i am getting redy to try it my self . My dietitan called today and wheni started my levels were 26 and now a week later it is at 20 so a big change please write back my email is no1bowler102588@yahoo.com

  3. Registered: Jan 20, 2010

    Posts: 0

    Charlottetown, Prince Edward Island

    Thanks for sharing your story. My guy is 2 and we’re just trying to navigate through the PKU experience. It helps to hear from people who
    are happy and healthy!  

  4. Registered: Dec 2, 2009

    Posts: 0

    Phelan, California

    This is a great story I know how you felt with school the same thing happend to me. I went off diet and if I could go back I would stay on it makes it so much harder. My husband and I are looking to start a family so any adivce you have I would love to hear from a woman who has been threw having kids with pku. I have been on diet now for 2 years waiting to get back on formula then we are going to start trying.

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