Guest guest Posted September 7, 2006 Report Share Posted September 7, 2006 dear rita, thank you for your feedback. i actually have family living 30 miles south of florida a small town called summerfield. my sister is an er nurse in the emergency dept at monroe memorial hospital in ocala. i grew up in miami and i have a brother teaching at usf in tampa. it sounds like your son is doing fairly well now. how bad is his liver? my son 's liver was in very bad shape and yet there where no overt signs. i'm still in shock over all of this, it seems surreal at times. did he go away to college or stay in gainsville? has he been able to cope with the medication and the appts? or has this pretty much subsided? when did you join the group? i have been looking for support wherever i can find it. i am also interested in new trials and experimental treatments. we are fortunate to be close to stanford, which lucille packard is part of. we have a good team of doctors on our case but i just need to make sure i have tried done everything. i really would like to avoid a transplant. thanks, rita -------------- Original message -------------- Hi Rita, Just read your message and although I am fairly new to this also, justwanted to say hello. I am your namesake, another Rita but on theother side of you, in Gainesville, Florida. I also have a son withboth PSC and UC. My son just started his sophomore year in collegeand turned 19 in June. He was diagnosed a year ago in June of 2005after nearly a year with diarrhoea. His senior year in high schoolwas miserable because of the diarrhea. He didn't always tell usabout it but he dropped out of the soccer team and he had playedsoccer in 9th (junior varsity) and then 10-11 on varsity teams. Atthe time he sited other reasons for quiting , little did we know. Thefamily doctor did not even think to check his liver enzymes and it wasonly after insisting to be refered to a GI and liver panel tests wererun that everything became clear and changed everyones life. recentlywe were told that he may have an overlap of the PSC with aut oimmunehepatitis. Yesterday we say another GI, not his regular one and thisone was doubtful that he has the autoimmune hepatitis. Anyway they allsay he has PSC and UC though. He is doing well at the moment. Theschool year just started and now he is playing quite a bit of rugbyand soccer. He is currently on azathioprine, ursadiol and asacol. Ialso let him take fish oil, calcium, folic acid and multivite. I knowhe doesn't take the supplements as regularly as his prescriptionsthough. There are many people here who have a lot of information andare always willing to give out information. This site has helped me alot in questions to ask, what supplements to take, etc and I hope youfind some information. It helps sometimes to search for a topic byrequesting for information under "search" when you get to this siteand you will be able to pull up a lot of responses from members. I hope your son soon finds what works for him because at t heir ages,there is so much going on that any extra stress is not healthy. Alwaysmake a list to ask a lot of questions when you see his doctor and makesure you are comfortable with his doctor because it is a long haul.Take care of yourself also.Rita (from Florida) Quote Link to comment Share on other sites More sharing options...
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