Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Hey guys, Thanks for all the support. My question is my 13 year old daughter was diagnosed 1 year ago with PSC but has shown no symtoms other elevated liver enzymes with her ulcerative colitis flares. One year ago her GI doctor did a MRCP and liver biopsy and confirmed her diagnosis. What I want to know is how soon can we expected symptoms to occur and what symptoms? I know everyone is different but I would appreciate this alot!!! All the websites I have found do not give enough information and I am frustrated because I don't know what to expect. Thanks Sincerely Margarett Ward Daughter age 13 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 THe only thing that seems to be predictable (in my opinion) is that the course of PSC is incredibly unpredictable. Just my $.02 worth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Hi Margarett; As others have already mentioned, the course of PSC is hard to predict and is very variable between patients. Researchers have made estimates of the average time from diagnosis to liver transplantation, but these averages can't be applied to everyone ... some patients progress fast, others progress more slowly, for unknown reasons. A thorough description of PSC, including that in children, can be found in this article [in .pdf format, meaning you will need Adobe Acrobat Reader installed on your computer to read it] (a summary of a Workshop held in Bethesda MD, in Sept. 2005): LaRusso NF, Shneider BL, Black D, Gores GJ, SP, Doo E, Hoofnagle JH 2006 Primary sclerosing cholangitis: summary of a workshop. Hepatology 44: 746-764 If you have 16 hours to spare (!), you can watch the videos and hear the audios of the 2 day conference here: Primary Sclerosing Cholangitis Research Workshop (Day 1) (NIH/ Foundation; Bethesda, MD, Sep. 19-20, 2005) [Format: RealVideo] Primary Sclerosing Cholangitis Research Workshop (Day 2) (NIH/ Foundation; Bethesda, MD, Sep. 19-20, 2005) [Format: RealVideo] Enjoy the fact that your daughter is without symptoms, but do be on the look out for itching (pruritus), fatigue, jaundice (yellowing of the skin), upper right quadrant pain, and chills and fever (bacterial cholangitis - potentially life-threatening bacterial infections of the biliary tree): http://www.pscpartners.org/PSCBrochure.pdf Best regards, Dave R. (father of (22); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
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