My Life Story

My Life Story

Avatar of Dana

My Life Story


November 5, 2009 in Uncategorized

Hello, My name is Dana and I have PKU. This is my first blog, and I am new to this website. I currently have no "friends". I would like to share my story to help in any way I can. Eight years ago I had a little boy who is perfectly normal and healthy. My doctors told me I could go off of diet after I was done breastfeeding him. I jumped at the chace to be "normal". I even was told not to drink formula anymore. Things were ok for about 4-5 years. Then in the summer of 2008 I was having severe anxiety attacks, depression, migraines, fogginess all at the same time. My life had to come to a complete stop because of my dizziness and fogginess. I had trouble processing information and my memory was non-existent. My anxiety was so bad that I would sleep maybe 3 hours, and then be awake the rest of the night. I was so tired that my brain hurt. I lived at the doctor's, but she was clueless. I tried 8 different medications to eliminate symptoms or to give me some relief. My doctor did a SCAT scan and eveything appeared normal. Then she ordered a MRI, and that is when it showed that over the 8 years I developed brain damage. I cried when I heard this news. Would I ever feel good again? I found out about the brain damage after I got back on the diet. When first starting back I was clueless how to keep track of Phe and how to draw blood. I had forgotten everything. I thought drinking formula would taste terrible, but I remembered the taste and it was not bad. I currently drink Phenylade 60(yum). I make smoothies with it. The clinic suggested Kuvan, but I refused. I thought I had been on enough pills. My levels are currently 5.1, and I have my life back. Please do not take yourself off of diet. Yes, it is not fun especially when you are young and dating, but it is what is best for you. Contact me if you have questions.

4 Reviews of My Life Story

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Thanks for sharing your story. I am glad to hear you are back on diet and got your levels down! I take Kuvan myself and have been for 2 years. If you end up having difficulty again following diet, I would suggest trying it to see if it would be ideal for you. And…. welcome to the site!

  2. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    wow…i’m glad you’re back on diet too. i don’t take kuvan either, and have recently been working to keep my levels down on my own. keep us updated!

  3. Registered: Sep 8, 2009

    Posts: 0


    Hi there,

    I m really glad your back on diet :-)

    I am working really hard to get my levels down again, the diet is hard!!!

    I am really interested in the part where you say your brain was damaged, did high levels of PHE actually cause the brain damage?


    I dont take Kuvan as in the UK they wont fund it over here!! gutted would love to try it!!

  4. Registered: Oct 1, 2009

    Posts: 0


    Wow. Thank you for your post. It has just given me even more motivation to try and keep my levels in check. I am curious too, was the brain damage from your high levels? What sort of brain damage was it?  I am so glad that you have gotten back on diet and are feeling good :)

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