My treatment includes Diet

My treatment includes Diet

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My treatment includes Diet

December 8, 2009 in Uncategorized

I have found this site by chance, I currently in the process of writing a report on how my PKU affects my biological makeup, why my supplement is important and why staying on diet improves my mood and emotional health. I have been out of college for almost ten years, this assignment was given by my therapist. I have been struggling with mental illness for 15 years, all of these years (except when I was pregnant) were spent off diet. I know that my illness is much greater than PKU alone, but in the last 8 months I have gone on a strict diet and drank my supplement over short spans. During these times I have noticed significant changes in my concentration, irritability and patience (which is easily noticable because I have a 5 and a 3 year old :) Over the past month I have gone through an extreme depressive episode with suicidal ideation, my therapist (whom has researched PKU for my benefit) assigned me the task of researching the benefits of keeping my levels of tyrosine and Phe within a healthy range. So here I am blogging instead of researching :) I am glad I found this site, I am hoping to be able to post my thoughts on a consistent basis. My struggle with depression and post-traumatic stress disorder has been a long battle, sticking with my treatment plan - my medication, therapy, assignments, bible study, along with staying on my PKU diet is my goal. It is hard and I need encouragement to stay with it. As a 31 year old woman I can say that I hate drinking my supplement - it is gross. I can also say that sticking to a low Phe diet is very hard, but we all need to give ourselves a little grace and pick ourselves up when we give in to temptation. I am speaking to myself here, I am so hard on myself when I fall. This research report is going to prove I need to stay on diet, I know it is best. Until next time.. ...back to my research! Andrea

3 Reviews of My treatment includes Diet

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Andrea -

    Thank you for sharing your experiences. My name is Katie, I am 25 years old, and have PKU. I have followed the low-pro diet all of my life, but have struggled in the past with drinking my formula. When I was in high school, I was very sick from not taking it. It actually caused my levels to go up. I often felt week, irritable, moody, and could not concentrate. It wasn’t until I forced myself to take formula and felt better that I truly realized what lack of formula did to me. Feeling much better has made me promise myself to never go back to that way. Yes, formula still can be tough. It def is gross. However, it is much more important for me to feel happy, be patient, and be able to attend to conversations. If you ever want to speak, feel free to message me. Keep up your hard work. And… try not to be so hard on yourself.


  2. Registered: Dec 2, 2009

    Posts: 0

    Phelan, California

    Andear- Wow thanks for sharing. My name is stephanie I am 24 and have classic PKU…Yes I understand about the formula I have been off of it for a while now but recently decided to get back on track. You are right its gross!!! But I know I feel better when I take it and for my health in the future I am getting back on track. Sounds like you are trying to do the same good for you! This site will really help being able to talk with people who deal with your struggles everyday makes you feel not alone :) well good luck and keep up the good work and dont be too hard on your self if you slip up we are all human and make mistakes Stephanie

  3. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Hi Andrea, thank you for sharing your story! I agree with both Katie and Stephanie. The formula can be pretty gross at times. It took me sixteen years before I found a formula that I could truly stand to take. Have you tried looking into taking another formula? There are so many formulas out there today that it might be worth your while to try them out. Anyway good luck, and if there is ever anything I can do to help please let me know.

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