Treatment Plan?

Treatment Plan?

Avatar of Andrea

Treatment Plan?

December 18, 2009 in Uncategorized

I made an appointment to get my Phe level drawn on Monday, I haven't got it drawn since I have been back on the diet. I wish I would have got it taken just before I started, oh well too late for that. I am interested in knowing what some of your treatment plans are, how often you get your levels drawn, was it more often when you first re-started your diet to figure out how much Phe and protein you could eat??? I am kind of out on my own, I have a genetics doctor but am working with my therapist (she is a CNS, APRN). I suppose I should see a dietician? and my genetics doctor? Why does this have to be so hard? Anyway, any suggestions would be helpful. I started logging my food intake, that is helping keep track of what I am eating so it will be easier to adjust my diet when I find out what my level is.

1 Review of Treatment Plan?

  1. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    Andrea good luck with the blood test! That is wonderful that you have started keeping a diet record of what you are eating. The diet records will definitely help you determine how much protein you should be eating when you get your phe levels back. You said you are seeing a medical geneticist right? Ask them about seeing a dietitian. In most cases the dietitian and medical geneticist work together. A dietitian might already be following your care, and you just don’t know it yet ;). Typically my clinic wants blood levels done monthly. Of course it is more often for pregnant women, infants, and people who have higher levels. When I began taking Kuvan I did weekly levels for almost a year. I now do blood tests every two or three weeks.

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Your email address will not be published.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