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...
Guest guest Posted September 8, 2006 Report Share Posted September 8, 2006 rita, my son is doing quite well in school and is taking some honors classes this year. it is a challenging time for him. as far as growth goes, he is 6'3 and a half inches tall. he lost 40 lbs but grew half an inch since the beginning of the year, so i don't think the psc has affected his growth. i found that you can order a beeper to remind when to take their meds. it is unobstrusive and i think that this makes a difference. you can get them from the website e-pill medication reminders. right now my son is taking his meds on time as it fits his schedule, once in the morning before school, once when he comes home and again before bedtime. there have been times all summer when i have had to remind him about it. i sure wish the meds could be consolidated in a time release pill but i guess that is too futuristic at this time. keep in touch, please. rita -------------- Original message -------------- Hi Rita, My son attends the University of Florida in gainesville and currentlycommutes from home. He has been threatening to move though. Actually he wanted to move his sophomore year but his friend he wasgoing to share a place with changed his mind and decided to commutefrom home this year.He now wants to move out in the spring or nextfall. I was glad that he is at home still because he is and has alwaysbeen a lousy eater and if at home, I at least can make sure that atleast he has a good meal in the evening. He takes his presciptionmedicines but I can see that he is actually not taking his multiviteand other supplements . We had to ask the doctor if he could changehis asacol from 2 tabs three times a day to three tabs twice a daysince he kept on missing the afternoon dose. When he had the liverbiosy last year, they said there was some fibriosis. His MRCP showedsome beading of the intra and extra hepatic bile ducts but no BR>cirrhosis. His labs are OK at the moment. He just had labs done onWednesday and so we have yet to get the results of those. His weightand height has stayed the same for quite some time now, actually evenbefore he was diagnosed but from what I read, may be a factor of thePSC. He gets quite depressed about not growing sometimes but at leastI am glad that his weight is not going down. He is OK, no pain oranything now. And I think I do enough worrying for the whole family.How is it affecting your son's schooling? This disease can be abummer.Rita Quote Link to comment Share on other sites More sharing options...
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