My Journey to a life with low phe levels.

My Journey to a life with low phe levels.

Avatar of Marilyn

My Journey to a life with low phe levels.

July 19, 2010 in Uncategorized

This is my first entry and I have not even contacted the pku clinic in Memphis. I have not even been trying to eat lower phe foods. I was diagnosed at birth and treated until I was 8 years old. I am now 48 and have many problems. I have depression and anxiety, chronic pain, and such a difficult time coping with every day problems. I know if I get my pku under control I will have less depression, less anxiety, possibly less pain and I will be able to cope with life. I want to something with my life but feel incapable. I feel unable to even begin but with Gods help and my husbands support I know that I will be able to. I tried to go back on diet when I was 26 and I know that my phe levels as I write this are well above 20. I would greatly appreciate advice from any one who would like to share, thanks, CATMAMA

2 Reviews of My Journey to a life with low phe levels.

  1. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Have you scheduled an appointment with a metabolic clinic yet? If not that is probably a good place to start. They can help you figure out which formula would be best for you, where to purchase PKU friendly foods if you’re interested in that, and get some blood work done to see where your levels are at. Treatment for PKU has changed tremendously during my lifetime (I am nineteen), so keep in mind that how PKU was treated last time you were one diet might not be the same as today. There is a huge variety of formulas, low protein foods, and even new medications out to assist in lowering levels…it’s very exciting all the changes that we’ve got :).

    Getting back on diet probably won’t be easy at first, but it will definitely worth it and better for your health. Feel free to post here if you need advice, help, or simply want to vent. I am sure you will do great :).

  2. Registered: Sep 20, 2007

    Posts: 0

    Woodbridge, New Jersey

    hi. I don’t have any advice for you. sorry, but i wanted you to know you are not alone. i am 52, diagnosed at age 5 and treated until age 10. tried diet in my early 30s. i have the same problems as you. “god” is no help, but I finally found a supportive husband. in the meantime, I struggle to get from 1 day to next. i hope it helps you to know you are not alone.

Add Comment Register


Your email address will not be published. Required fields are marked *

Comment *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Processing your request, Please wait....


Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional