Guest guest Posted January 2, 2000 Report Share Posted January 2, 2000 Welcome Rob, Please don't worry about your post being too long some of us really get long winded. Sorry to hear that another child has been diagnosed with this awful disease. We have a member Pam who lives in Chicago and has a son who has PSC you might want to talk more with her. I'm sure if she's watching she'll contact you. Please update your son on the database. included instructions and a link but I had trouble getting into it. E-groups has kicked us out for some reason so we have to re-enter. I found that going to /list/ took me into the web page where you can get into the database. If you still have a problem contact at PSCModerator1@... to help you. Once you get into it be sure to bookmark it. You can print out the database and you'll have a record of all of us that will help you keep track of us. Peg wife of Phil (56)UC 30 years, dx PSC12/28/98, appt with UCLA 1/10/2000 to hopefully get listed, keep us in your prayers Rob Raizk wrote: > Hello Everyone, > > My name is Rob. My son is 8-1/2 years old. He was Dx in 1993. > At age one my son started to have blood in his stool. A colonoscopy was > done. Nothing conclusive was determined and there were no other > symptoms at that time. So the doctor said to monitor him and not to > worry. > > He, over the next two years, had several episodes of blood in his > stool. Each time the doctor was contacted, and with no other symptoms > the bleeding would stop after a couple of days. > > By the age of three, in 1993, the bleeding started, but now there were > other symptoms: cramping, pain, and fever. They scoped him and > determined UC was the cause. While he was hospitalized, labs had been > drawn. Now they were seeing elevated liver functions. So, after liver > biopsies and an ERCP, they had a diagnosis of PSC and UC. They started > him on Actigall and sulfasalazine. > > We were in shock. I immediately challenged this diagnosis. This to me > from reading all I could about PSC just didn't add up. His age and the > rate of progression seemed too fast, but after a second and even a > third opinion and a couple of more liver biopsies, the diagnosis > remained the same. > > Original diagnosis was made at Oakland Childrens Hospital, California. > He was also seen at Stanford University, Childrens at Cincinnatti, and > now at Riley Childrens Hospital, Indiana where we now live. > > has had three GI bleeds since 1996 when he had TIPPS done to > reduce portal hypertension. Liver synthetic functions continue to slip, > and they have revised his TIPPS each time he has had bleeds. > > He was just evaluated for TX and, in October 1999, listed as a status > 3. We chose Childrens Memorial Hospital, Chicago for his TX center, > which is a four hour drive for us. > > Each time has had trouble with his UC flare-ups, which all have > required hospital stays, he always tests positive for Clostridium > difficile, which is a bacterial infection. These together, UC and C. > difficile, really wipe him out. > > Has anyone with an IBD condition had problems with C. difficile? The > transplant team is concerned about his history with C. difficile > because of post transplant infection getting out of control. > > When looking at my son's case history, based on age, you have to wonder > what causes PSC. Could it be exposure to chemicals or could it have > been my exposure or his mom's? I think his body's immune system over > reacted to a common viral condition and has never stopped attacking > since, i.e., liver, intestines. > > I hope my post wasn't too long, but I felt like I needed to tell our > story to people who know this disease and have lived with it. > > I am very glad I decided to join this informative group and would > appreciate any comments you may have. > > 's current medications include Actigall 600 mg, Asacol 2000 mg, > mephyton 10 mg, two multivitamins, and a Tums for calcium per day. > > Thank you very much, > > 's dad, > > Rob > > ------------------------------------------------------------------------ > Sneezing, wheezing, trouble breathing? If you have allergies or asthma, or > > want to breathe happier and healthier, we can help. Visit gazoontite.com > > for the products, information and services you need to breathe easier. > http://click./1/396/4/_/24674/_/946844637 > > -- Check out your group's private Chat room > -- /ChatPage?listName= & m=1 Quote Link to comment Share on other sites More sharing options...
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