my experiences with Kuvan day 9

my experiences with Kuvan day 9

Avatar of Andolyn

my experiences with Kuvan day 9

July 7, 2009 in Uncategorized

Its day 9 for me with Kuvan.. I am learning little things .. like i cant take that stuff with water. Would make alka seltzer look like a picnic. I seriously gagged alot when i tried taht . Also Kuvan doesnt like to dissolve so well at times. I do get hungry as i am actually more restricted currently than i usually am. I have to count every little thing. And sometimes they dont count things the way i do . so it makes it harder. i have

10 Reviews of my experiences with Kuvan day 9

  1. Registered: Jul 7, 2009

    Posts: 0

    , INTERNATIONAL

    Zak said on July 7, 2009

    HI, im 17 and i have classical PKU I have recently been thinking of comming off the diet for maybe a month or so, just to experiment with it. but i have done quite a bit of reasearch and i have just come across these Kuvan pills but i cant find any where if there available in the U.K and I know your diet would be totaly different but what dosage do you take and have you had any side effects??

  2. Registered: May 2, 2009

    Posts: 0

    Topeka, Kansas

    first of all for me they make me stick to the diet.. which is no fun but as time goes i can relax it some. hopefully if i respnd. it depends on your weight how many pills you would take.
    i take 23 but that is because i am not a small person. mostly i do feel tired at times and my stomach gets not sick but a little more tense than usual. really i havent had it bad on side affects. i havent seen a lot of lowering of levels from my first blood test but maybe this next time it will lower for me.
    also the pills come from a company called biomarin.. i dont know if they are in the uk also but you could look them up on line. I hope that helps :)

  3. Registered: Jul 11, 2009

    Posts: 0

    , Ohio

    My little sister and I tried Kuvan and discovered that crushing them and putting them in an empty capsule, well okay several empty capsules, worked rather well because it got rid of the taste, well sorta, and made them easier to swallow. I, 15, had to take 8 of the Kuvan pills my sister, 9, had to take 6. I did find that if i didn’t eat anything right after taking them, that I did get sick and then the Kuvan didn’t end up in my system. I used Cranberry Juice to take he Kuvan if we didn’t have capsules to put it in. 

  4. Registered: May 2, 2009

    Posts: 0

    Topeka, Kansas

    that is a good idea thank you so much .

  5. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I actually swallow the Kuvan whole… I found they did not dissolve well either… for me, swallowing the pills is easier! Also, counting can be difficult, however it is so important to know whether or not you respond to the Kuvan. And if you do respond to Kuvan, how much protein your body can handle… I have been on Kuvan for a year and a half and its been a fun journey. It sure has not been easy, it does take some dedication. A bit of trial and error too! Best of luck to you!

  6. Registered: May 2, 2009

    Posts: 0

    Topeka, Kansas

    Thank you Katiemag.. finally my level went down today .. and i am so glad . ugh some progress and yes it is a journey. i long for grains. i just want to eat bread or something normal. And thank you for sharing how you take them whole. i finally got some of mine to some what dissolve last night . sometimes i do take them whole. Appreciate the input !

  7. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    I am glad to hear your levels went down! Keep up the good work. It all pays off in the end. :)

  8. Registered: May 2, 2009

    Posts: 0

    Topeka, Kansas

    i am hoping so havent seen too much of a change.

  9. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    My son swallows the pills whole too. When I spoke to BioMarin, they said swallowing whole was fine. I hope your levels keep going down. Keep up the good work!

  10. Registered: May 2, 2009

    Posts: 0

    Topeka, Kansas

    thank you for the comment.. i am almost out of kuvan tablets and i cant do anything on the weekend so tomorow i will be on the phone to see what is the best thing to do .

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