A New Hope

A New Hope

Avatar of Erin

A New Hope

by

June 23, 2009 in Uncategorized

I have been waiting MONTHS to blog about my recent experiences. What was a waiting for? Well, I was waiting to know the results of my months of KUVAN. My entire life I have been following special diets with little hope of change. The past year, their was at last hope. For the first time in my life, I have been able to eat "normal". I have tried pepperoni pizza, cheese quesadillas, fettuccine Alfredo, grilled cheese, ham, mozzarella sticks, etc. It's not really "normal". I have no idea how to eat "normal". My protein levels have been all over the board (translation: doctors have NO idea how much protein I am supposed to eat these days). Although eating "normal" is fun and easier socially, most the time I just crave french fries :) Most my life, I have been eating about 15g-20g of protein a day. Right now I am supposed to eat 40g a day. My test results are "confusing" (Those were my doctor's words). I am finding it not really worth the problems - I feel a bit slow. My new found love for cheese would easily be traded for some french fries. Does my future hold cheese or french fries? I have no idea. I'll write more as I find out. But it is indeed an interesting adventure, hopefully one without lasting brain damage :) This is adapted from a post in my actual blog... http://elamourie.blogspot.com/

4 Reviews of A New Hope

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I have had similar experiences with you! I always ate a low-pro diet, but now I have been able to increase the amount of protein intake into my diet. Who would have thought it would be difficult for me to add more protein in a given day to make it a consistent intake for doctors to determine whether or not Kuvan is working and what the appropriate amounts my body can handle. It is very exciting, and I am happy my wonderful experience is being carried out with others like you : ) best of luck always!

  2. Registered: May 2, 2009

    Posts: 0

    Topeka, Kansas

    i hope that it comes out well for you .whatever is the best .. i start kuvan on Monday.. who knows what my results may be but i know all the foods you speak of since i was taken off diet from the docs .. i got to say they are good for the most part. :)

  3. Registered: Jan 17, 2007

    Posts: 0

    Myrtleford, INTERNATIONAL

    I also love cheese..in fact I feel a little addicted! But I am not on Kuvan..How does it work? Who can take it? I am not under any specialist and havent been for a long time. Just wondering if it might be for me too…thanks Justine (in Australia)

  4. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Justine… in order to start Kuvan, you have to be seen by a dietitian… The company Kuvan is sold by is BIOMarin. You should check out their website for additional information regarding the drug. I have been taking Kuvan for about 2 years now and would be happy to answer any questions you might have too. They are finding about 60% of PKU patients who try Kuvan respond to the drug.. Therefore, not ALL patients do respond. The simplified version of what Kuvan is…. It acts as the enzyme our body does not have to convert one amino acid to the other which is essential for our bodies… And because we do not have this enzyme, we can not eat protein… so if you do respond to Kuvan, your PHE levels will lower… I know this might be still confusing, but please feel free to ask questions : )

Add Comment Register



Comment

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....

    Archives

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