taken off kuvan

taken off kuvan

Avatar of Colleen

taken off kuvan

October 24, 2009 in Uncategorized

Well a little while ago I started getting some nasty effects from the Kuvan I was on. It happens to 4% of pku patients, explosive diarreah. Ffft I'm in that "lucky" 4% so I was quickly taken off the kuvan. Been pretty bummed and upset it was just starting to work well last level was the best I've had. Here it isn't working out. So I'll be moving onto my brother's property in a prefabricated house. I'll be getting a larger kitchen....too bad I got rid of the majority of my kitchen doodads. But I still have bread machine. I'm very anxious to try the tv dinners that cambrooke foods is now carrying, but have to wait for assistance. I just can't afford food at this time. It's been a little while but still not adjusted to formula . Hopefully that'll be soon. GAGONY!

2 Reviews of taken off kuvan

  1. Registered: Oct 26, 2009

    Posts: 0

    , Arkansas

    Hey there…remember me..this is stacy…from myspace…i am sorry this hasnt worked out for you..i do hope for the best..cambrook came out with tv dinners..thats crazy…im fixin to try the lanaflex…

  2. Registered: May 27, 2007

    Posts: 0

    , Texas

    Hi ya Stacy sure I remember you!

    Just a little update–I started back on the kuvan about a month or 2 ago with a few changes for anyone who has the same problem I did my dietician and metabolic nurse suggested I use Gatorade rather than fruit juice to mix it in, and to split it to 2 doses of 11 per day. It worked just fine…..however the Kuvan expired and they didn’t want me taking it…soooo I’m back on the Periflex Advantage and trying to do the diet. I flavored up the periflex enough so I don’t mind drinking it so far no GI problem.

    I do have a new problem, most of the low protein foods I ordered, I can’t eat..still no teeth. ( I’ve said it before I’ll say it again–take extra care of your teeth. You sure don’t want to lose them at an early age like I did.) Guess if I need bread/buns I’ll have to go back to homemade in hoping they’re soft enough to gum though another issue…other conditions make it sooo hard to stand up in kitchen for any length of time. UGH problems, problems problems! You can probably tell by my tone level’s high

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