Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Steve - has he already been diagnosed with PSC? Has he already had a liver biopsy? I would want to see what your docs think about the PSC vs. Autoimmune Hepatitis as that will warrant some different approaches going forward. Ask them about an ERCP as well - what/when do they think they may want to do that. Is your son on Ursodiol? Also, there is a " psc moms " support group where you can get some info on the Oral Vancomycin - may be a good question for your docs too. The challenge we have found with our soon to be 8 year old son is the issue of staging the disease and determining when we should start thinking about a liver transplant (ugh!). The strategy our doc in Houston is employing is to manage the inflamation of the liver (with prednisone), keep the Ursodiol in him to balance the good bile vs 'bad' bile acids, and as of a couple of months ago trying the Oral Vancomycin (which it looks like may be working well) so as to prolong the functioning and life of his liver. These are good things to talk about with your docs. Hey all, I always read the posts and find them so helpful as you guys are wonderful people. I know you all have your hands full but I need some advise. My Tyler has been feeling not so good for the past several weeks off and on . He is tired, nauseated constantly and very bad headaches and tummy aches. Feels pressure and full in his abdomen and feels bulges that are not suppose to be there. His GGT was creeping slowly and no one seemed to concerned and I kept calling to say that he is not well. Although he barrels thru every day with as much as energy he can master and looking at him he looks pretty good with the exception of the large blackish yellowish circles around his eyes. Anyway, today my concerns were validated as his GGT reached 477 more then doubled from two weeks ago AST 64 and ALT 171. Bilirubin is normal. They want to do a MRCP on Friday and liver biopsy on Tuesday next week. Are we looking for Ascites, sludge, any clues>> What should I ask for? Any suggestions so I can stay on top...Thanks in advance for suggestions... At Your Service,Stevie Lynn Gedgaudas-OStosCustomer Care Senior ManagerApple Vacations101 Northwest Point Blvd.Elk Grove Village, IL 60007sgedgaud@... -- Don Vardell Jr.dvardell2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Hi Don, yes he was diagnosed in 2007 when he ws very ill with UC (which resulted in a blood transfusion) and GGT in the 900's. Since then the Urso has been working and now he is regressing as you can see with the recent labs and symptoms. He has been on Remicade for over a year. It seems like he started slipping after his last infusion at the end of January. At Your Service, Stevie Lynn Gedgaudas-OStos Don Vardell Jr Don Vardell Jr Sent by: 03/04/2009 05:07 PM Please respond to To cc Subject Re: my 11 year old Steve - has he already been diagnosed with PSC? Has he already had a liver biopsy? I would want to see what your docs think about the PSC vs. Autoimmune Hepatitis as that will warrant some different approaches going forward. Ask them about an ERCP as well - what/when do they think they may want to do that. Is your son on Ursodiol? Also, there is a " psc moms " support group where you can get some info on the Oral Vancomycin - may be a good question for your docs too. The challenge we have found with our soon to be 8 year old son is the issue of staging the disease and determining when we should start thinking about a liver transplant (ugh!). The strategy our doc in Houston is employing is to manage the inflamation of the liver (with prednisone), keep the Ursodiol in him to balance the good bile vs 'bad' bile acids, and as of a couple of months ago trying the Oral Vancomycin (which it looks like may be working well) so as to prolong the functioning and life of his liver. These are good things to talk about with your docs. Hey all, I always read the posts and find them so helpful as you guys are wonderful people. I know you all have your hands full but I need some advise. My Tyler has been feeling not so good for the past several weeks off and on . He is tired, nauseated constantly and very bad headaches and tummy aches. Feels pressure and full in his abdomen and feels bulges that are not suppose to be there. His GGT was creeping slowly and no one seemed to concerned and I kept calling to say that he is not well. Although he barrels thru every day with as much as energy he can master and looking at him he looks pretty good with the exception of the large blackish yellowish circles around his eyes. Anyway, today my concerns were validated as his GGT reached 477 more then doubled from two weeks ago AST 64 and ALT 171. Bilirubin is normal. They want to do a MRCP on Friday and liver biopsy on Tuesday next week. Are we looking for Ascites, sludge, any clues>> What should I ask for? Any suggestions so I can stay on top... Thanks in advance for suggestions... At Your Service, Stevie Lynn Gedgaudas-OStos Customer Care Senior Manager Apple Vacations 101 Northwest Point Blvd. Elk Grove Village, IL 60007 sgedgaud@... -- Don Vardell Jr. dvardell2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Okay - our son is on Colazol for his UC and again, ask your docs about the Oral Vancomycin (from a trial at Stanford University) which seems to be contributing to our son's numbers going down. Have you been through the Prednisone regimin? Hi Don, yes he was diagnosed in 2007 when he ws very ill with UC (which resulted in a blood transfusion) and GGT in the 900's. Since then the Urso has been working and now he is regressing as you can see with the recent labs and symptoms. He has been on Remicade for over a year. It seems like he started slipping after his last infusion at the end of January. At Your Service,Stevie Lynn Gedgaudas-OStosDon Vardell Jr Don Vardell Jr Sent by: 03/04/2009 05:07 PM Please respond to To cc Subject Re: my 11 year old Steve - has he already been diagnosed with PSC? Has he already had a liver biopsy? I would want to see what your docs think about the PSC vs. Autoimmune Hepatitis as that will warrant some different approaches going forward. Ask them about an ERCP as well - what/when do they think they may want to do that. Is your son on Ursodiol? Also, there is a " psc moms " support group where you can get some info on the Oral Vancomycin - may be a good question for your docs too. The challenge we have found with our soon to be 8 year old son is the issue of staging the disease and determining when we should start thinking about a liver transplant (ugh!). The strategy our doc in Houston is employing is to manage the inflamation of the liver (with prednisone), keep the Ursodiol in him to balance the good bile vs 'bad' bile acids, and as of a couple of months ago trying the Oral Vancomycin (which it looks like may be working well) so as to prolong the functioning and life of his liver. These are good things to talk about with your docs. Hey all, I always read the posts and find them so helpful as you guys are wonderful people. I know you all have your hands full but I need some advise. My Tyler has been feeling not so good for the past several weeks off and on . He is tired, nauseated constantly and very bad headaches and tummy aches. Feels pressure and full in his abdomen and feels bulges that are not suppose to be there. His GGT was creeping slowly and no one seemed to concerned and I kept calling to say that he is not well. Although he barrels thru every day with as much as energy he can master and looking at him he looks pretty good with the exception of the large blackish yellowish circles around his eyes. Anyway, today my concerns were validated as his GGT reached 477 more then doubled from two weeks ago AST 64 and ALT 171. Bilirubin is normal. They want to do a MRCP on Friday and liver biopsy on Tuesday next week. Are we looking for Ascites, sludge, any clues>> What should I ask for? Any suggestions so I can stay on top...Thanks in advance for suggestions... At Your Service,Stevie Lynn Gedgaudas-OStosCustomer Care Senior ManagerApple Vacations101 Northwest Point Blvd.Elk Grove Village, IL 60007 sgedgaud@...-- Don Vardell Jr. dvardell2@... -- Don Vardell Jr.dvardell2@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2009 Report Share Posted March 4, 2009 Yep, been thru the Prednisone regimen and he became so dependent that once he tried to go off, he would bleed which is why we are on Remicade. I will ask about the Oral Vancomycin as that has not been mentioned to us....thanks for the insight, we welcome all the info we can get..l..... STevie Don Vardell Jr Don Vardell Jr Sent by: 03/04/2009 05:54 PM Please respond to To cc Subject Re: my 11 year old Okay - our son is on Colazol for his UC and again, ask your docs about the Oral Vancomycin (from a trial at Stanford University) which seems to be contributing to our son's numbers going down. Have you been through the Prednisone regimin? Hi Don, yes he was diagnosed in 2007 when he ws very ill with UC (which resulted in a blood transfusion) and GGT in the 900's. Since then the Urso has been working and now he is regressing as you can see with the recent labs and symptoms. He has been on Remicade for over a year. It seems like he started slipping after his last infusion at the end of January. At Your Service, Stevie Lynn Gedgaudas-OStos Don Vardell Jr Don Vardell Jr Sent by: 03/04/2009 05:07 PM Please respond to To cc Subject Re: my 11 year old Steve - has he already been diagnosed with PSC? Has he already had a liver biopsy? I would want to see what your docs think about the PSC vs. Autoimmune Hepatitis as that will warrant some different approaches going forward. Ask them about an ERCP as well - what/when do they think they may want to do that. Is your son on Ursodiol? Also, there is a " psc moms " support group where you can get some info on the Oral Vancomycin - may be a good question for your docs too. The challenge we have found with our soon to be 8 year old son is the issue of staging the disease and determining when we should start thinking about a liver transplant (ugh!). The strategy our doc in Houston is employing is to manage the inflamation of the liver (with prednisone), keep the Ursodiol in him to balance the good bile vs 'bad' bile acids, and as of a couple of months ago trying the Oral Vancomycin (which it looks like may be working well) so as to prolong the functioning and life of his liver. These are good things to talk about with your docs. Hey all, I always read the posts and find them so helpful as you guys are wonderful people. I know you all have your hands full but I need some advise. My Tyler has been feeling not so good for the past several weeks off and on . He is tired, nauseated constantly and very bad headaches and tummy aches. Feels pressure and full in his abdomen and feels bulges that are not suppose to be there. His GGT was creeping slowly and no one seemed to concerned and I kept calling to say that he is not well. Although he barrels thru every day with as much as energy he can master and looking at him he looks pretty good with the exception of the large blackish yellowish circles around his eyes. Anyway, today my concerns were validated as his GGT reached 477 more then doubled from two weeks ago AST 64 and ALT 171. Bilirubin is normal. They want to do a MRCP on Friday and liver biopsy on Tuesday next week. Are we looking for Ascites, sludge, any clues>> What should I ask for? Any suggestions so I can stay on top... Thanks in advance for suggestions... At Your Service, Stevie Lynn Gedgaudas-OStos Customer Care Senior Manager Apple Vacations 101 Northwest Point Blvd. Elk Grove Village, IL 60007 sgedgaud@... -- Don Vardell Jr. dvardell2@... -- Don Vardell Jr. dvardell2@... Quote Link to comment Share on other sites More sharing options...
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