Guest guest Posted August 16, 2007 Report Share Posted August 16, 2007 I do appreciate your input... I would prefer to drive myself of course. Andi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 Regarding Remicade infusions, Dr. Brown of Children's Memorial Hospital in Illinois is our pediatric GI doctor who is adamant that Tyler (9yrs old) needs these infusions since his UC is still not completely under control after a year of Steroid therapy. While he is only having minimum blood and going only 2-3 times a day, the Dr. feels that he should by now be going regular with no blood and formed stools so he feelsstrongly about Remicde. We are horrified after reading the potential side effects and long term affects such as Lymphoma. They want to start these next week and Tyler's hepatology (Dr. Whittington) is in support of Remicde as well. Does anyone have any info good or bad for us to review? Also, Dr. Brown is part of a research team sponsored by the foundation and Tyler has just recently been enrolled in this study to gather data from Pediatric PSC patients. so, my question is if we do this fund raiser for the Road to ville, how does the monies get dispersed. Should we do a fund raiser with Children's Hospital direct or thru PSC..... Just looking for the best route as I know we can get numerous people to donate but I want to be sure it is going to the right place and this is all new to us. Thanks for any info on the above two issues. Gedgaudas-OStos and OStos & Tyler 9yrs old McKenna 5 yrs old.... sgedgaud@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2007 Report Share Posted August 17, 2007 The Remicade treatment did not work for me. I have had diarreha and bloody stools since 1995 with no formed stools since that time except for 1 or 2 days during prednisone treatment. I have also tried Imuran and that didnt work either. I have a combination of Crohn's and UC. I hope the Remicade works for Tyler or they find another treatment that will help him. PattiStevie Gedgaudas wrote: Regarding Remicade infusions, Dr. Brown of Children's Memorial Hospital in Illinois is our pediatric GI doctor who is adamant that Tyler (9yrs old) needs these infusions since his UC is still not completely under control after a year of Steroid therapy. While he is only having minimum blood and going only 2-3 times a day, the Dr. feels that he should by now be going regular with no blood and formed stools so he feelsstrongly about Remicde. We are horrified after reading the potential side effects and long term affects such as Lymphoma. They want to start these next week and Tyler's hepatology (Dr. Whittington) is in support of Remicde as well. Does anyone have any info good or bad for us to review?Also, Dr. Brown is part of a research team sponsored by the foundation and Tyler has just recently been enrolled in this study to gather data from Pediatric PSC patients. so, my question is if we do this fund raiser for the Road to ville, how does the monies get dispersed. Should we do a fund raiser with Children's Hospital direct or thru PSC..... Just looking for the best route as I know we can get numerous people to donate but I want to be sure it is going to the right place and this is all new to us. Thanks for any info on the above two issues. Gedgaudas-OStos and OStos & Tyler 9yrs oldMcKenna 5 yrs old.... sgedgaud (AT) applevac (DOT) com Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 Dear all, I am confused. My son-Tyler (9yrs) has the PSC and UC. We are still struggling with UC but I understand that Remicade is our next step. So, what happens with the PSC. Right now his liver tests are pretty nromal with the Urso. But, could he still experience the fatigue? Will the tests become elevated again even with the Urso. What should we watch for. Do episodes come on even with the Urso? Let me know.your thoughts and Ostos Tyler (age 9) McKenna (age 5). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2007 Report Share Posted August 22, 2007 Hi ; I know it is a tough decision as to whether or not to try Remicade (infliximab), because of all the reported side-effects. I hope that this is successful for Tyler. My son has been on high-dose ursodiol for the last 4 years, and his liver function tests have slowly returned to near normal. He has had fatigue even on the ursodiol, and itching (pruritus) had to be controlled by an additional prescription of rifampin. As I understand it bile-duct strictures can still occur while taking ursodiol. According to Adolf Stiehl, in Germany, when dominant strictures (stenoses) develop that are accessible to endoscopy, then balloon dilatation is often effective in opening these blocked ducts, resulting in improved survival free of liver transplantation. Semin Liver Dis. 2006 Feb;26(1):62-8. Primary sclerosing cholangitis: the role of endoscopic therapy. Stiehl A Department of Medicine, University of Heidelberg, Heidelberg, Germany. adolf_stiehl@... Primary sclerosing cholangitis is characterized by progressive fibrosing inflammation of the bile ducts leading to their obliteration, resulting in cholestasis, and finally, cirrhosis of the liver. The majority of patients with advanced disease with time develop dominant stenoses of major bile ducts. Such dominant stenoses may be recognized by magnetic resonance cholangiopancreatography with good specificity and sensitivity, but for definite diagnosis and especially for therapeutic decisions, endoscopic retrograde cholangiography still represents the gold standard. Ursodeoxycholic acid treatment does not prevent the development of such stenoses. Endoscopic measures allow the opening of short- and long-segment stenoses of the common bile duct. Short- but not long-segment stenoses of the hepatic ducts near to the bifurcation also may be treated endoscopically. Repeated balloon dilatations over years appear to be the treatment of choice. In patients treated by early endoscopic dilatation of dominant stenoses, survival may be significantly improved compared with the predicted survival. PMID: 16496234. It is likely that if bile-duct strictures develop even while taking ursodiol, you may see an increase in serum alkaline phosphatase and gamma-glutamyltranspeptidase, and perhaps bilirubin. Bile-duct blockages can also result in bacterial cholangitis infections, characterized by fever and chills, and upper right quadrant pain. When these symptoms are encountered it is important to seek medical treatment as soon as possible. Please see: http://home.insightbb.com/~rhodesdavid/FAQ.htm What is a cholangitis attack, and what are the symptoms? for further details. Best regards, Dave (father of (22); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
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