Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 I posted this on the moms groups ....but thought this was worth posting here too. These are obviously just my observations and may not apply to many/any here but thought I should share. Please correct me if I am wrong in quoting you Traci !! I know Traci has said that in order to be in the Stanford trial of vancomycin for treating PSC you need to be in the earlier stages of PSC. I personally don't see any harm in asking your child's own physicians to prescribe it especially if your kids have signs that they could have now or have had at some point a bacterial cause for their colitis/IBD or PSC. I know Traci has said that they are launching a study to determine the bacteria that causes PSC right ? If vancomycin is succesful in treating PSC then it makes sense to me that since vancomycin in the capsule/powder form is indicated for according to the rx insert " treatment of enterocolitiscaused by staphyloccocus aureus(including methicillin-resistant strains) and antibiotic-associated pseudomebranous colitis caused by clostridium difficile " " capsules must be given orally for these indications " When I was recently diagnosed with c diff and treated with vancomycin- vancocin HCL (vancomycin hydrochloride capsules, USP) I saw a huge improvement in some very long term symptoms I have been having. I saw an infectious disease dr because I have had infected hematomas and abdominal abscesses after my recent surgery and then c diff. I wanted to see if I had some type of chronic/recurring c diff problem that has cause my IBD and liver problems (I have not been diagnosed w/ PSC but had stage 3 bridging fibrosis on biopsy) I am now a HUGE fan of vancomycin and am very excited for the prospect of it helping Braden when we start it today for him. I really think it could help all kids here who have signs that they could have c diff induced colitis. When I had my recent stool testing...sorry TMI it seems when y0ou are talking about yourself vs your kids...they found red and white cells and were quite certain it was c diff before the cultures came back positive. I have found that the tricky thing about c diff is that it is 'everywhere' can live for a very long time in places..especially hospitals, is often never treated because it goes away or partly goes away on it's own or the source of chronic problems is never identified. Another treatment for c diff is probiotics that can take longer - even up to a year to see results from, so it makes sense to me that aggressive probiotic treatments can only help too. The comforting thing to me about vancomycin is that it is not absorbed systemically and is specific to the gut and since it targets gram positive (bad) bacteria and not all of the good and bad bacteria in the gut seems quite safe to use. Lori lucky mom blessed with triplets www.caringbridge.org/visit/bradenwild Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 A clarification - gram positive/negative bacteria simply respond to a dye differently; there are " bad " bacteria in both groups. Gram-negative bacteria include Salmonella, Meningitis, E-coli, Gonorrhoeae, Pseudomonas, etc. Some gram-positive bacteria are Listeria, Staphylococcus, Streptococcus, Enterococcus, and Clostridium. ANY antibiotic will upset the natural flora/fauna population of the gut. We alway supplement our animals with a probiotic if we have to use an antibiotic. You might be interested in these articles on probiotics: http://www.timesonline.co.uk/tol/life_and_style/health/features/article5109777.e\ ce http://news.bbc.co.uk/1/hi/health/7708895.stm Vancomycin is not a panacea, and should be used with respect. It is a powerful drug and may have significant side effects (permanent hearing loss, severe allergic reactions). As I've said before, EVERY drug has risks associated with it - the goal is to assure the benefit of taking them greatly exceeds the risk. Arne ---- wildwildtrips clwild1@...> wrote: ============= .... The comforting thing to me about vancomycin is that it is not absorbed systemically and is specific to the gut and since it targets gram positive (bad) bacteria and not all of the good and bad bacteria in the gut seems quite safe to use. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 Arne- I totally agree with using any antibiotic with caution and only when indicated. We also use culturelle probiotics every day for Braden. the side affects that you quoted for vancomycin are for the IV form when administered in IV form ( ie not when the IV (liquid) drug is given orally) and not when the capsules are taken orally. The capsule form of vancomycin is not systemically absorbed and targets just the gut. I had a long discussion with my son's GI and a very well respected infectious disease dr about vancomycin and for us at least the potential benefits from using are huge. I guess I didn't clarify what I was trying to say very well and I know many antibiotics (not vancomycin) target the beneficial and harmful bacteria the same but I know the oral vancomycin targets 2 specific gram + bacteria. Lori lucky mom blessed with triplets > > ============= > ... The comforting thing to me about vancomycin is that it is not absorbed > systemically and is specific to the gut and since it targets gram > positive (bad) bacteria and not all of the good and bad bacteria in > the gut seems quite safe to use. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 Arne- I totally agree with using any antibiotic with caution and only when indicated. We also use culturelle probiotics every day for Braden. the side affects that you quoted for vancomycin are for the IV form when administered in IV form ( ie not when the IV (liquid) drug is given orally) and not when the capsules are taken orally. The capsule form of vancomycin is not systemically absorbed and targets just the gut. I had a long discussion with my son's GI and a very well respected infectious disease dr about vancomycin and for us at least the potential benefits from using are huge. I guess I didn't clarify what I was trying to say very well and I know many antibiotics (not vancomycin) target the beneficial and harmful bacteria the same but I know the oral vancomycin targets 2 specific gram + bacteria. Lori lucky mom blessed with triplets > > ============= > ... The comforting thing to me about vancomycin is that it is not absorbed > systemically and is specific to the gut and since it targets gram > positive (bad) bacteria and not all of the good and bad bacteria in > the gut seems quite safe to use. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 Where can I get more information on this trial? Is there a link that you can send me? Thank you > > I posted this on the moms groups ....but thought this was worth > posting here too. These are obviously just my observations and may not > apply to many/any here but thought I should share. > > Please correct me if I am wrong in quoting you Traci !! > > I know Traci has said that in order to be in the Stanford trial of > vancomycin for treating PSC you need to be in the earlier stages of > PSC. I personally don't see any harm in asking your child's own > physicians to prescribe it especially if your kids have signs that > they could have now or have had at some point a bacterial cause for > their colitis/IBD or PSC. I know Traci has said that they are > launching a study to determine the bacteria that causes PSC right ? If > vancomycin is succesful in treating PSC then it makes sense to me that > since vancomycin in the capsule/powder form is indicated for according > to the rx insert " treatment of enterocolitiscaused by staphyloccocus > aureus(including methicillin-resistant strains) and > antibiotic-associated pseudomebranous colitis caused by clostridium > difficile " > > " capsules must be given orally for these indications " > > When I was recently diagnosed with c diff and treated with vancomycin- > vancocin HCL (vancomycin hydrochloride capsules, USP) I saw a huge > improvement in some very long term symptoms I have been having. I saw > an infectious disease dr because I have had infected hematomas and > abdominal abscesses after my recent surgery and then c diff. I wanted > to see if I had some type of chronic/recurring c diff problem that has > cause my IBD and liver problems (I have not been diagnosed w/ PSC but > had stage 3 bridging fibrosis on biopsy) > > I am now a HUGE fan of vancomycin and am very excited for the prospect > of it helping Braden when we start it today for him. > I really think it could help all kids here who have signs that they > could have c diff induced colitis. When I had my recent stool > testing...sorry TMI it seems when y0ou are talking about yourself vs > your kids...they found red and white cells and were quite certain it > was c diff before the cultures came back positive. > I have found that the tricky thing about c diff is that it is > 'everywhere' can live for a very long time in places..especially > hospitals, is often never treated because it goes away or partly goes > away on it's own or the source of chronic problems is never identified. > > Another treatment for c diff is probiotics that can take longer - even > up to a year to see results from, so it makes sense to me that > aggressive probiotic treatments can only help too. > The comforting thing to me about vancomycin is that it is not absorbed > systemically and is specific to the gut and since it targets gram > positive (bad) bacteria and not all of the good and bad bacteria in > the gut seems quite safe to use. > > Lori > lucky mom blessed with triplets > www.caringbridge.org/visit/bradenwild > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 Hi " rcurrier1 " ; As I understand it the vancomycin study at Stanford University is restricted to children and adolescents: Davies YK, KM, Abdullah BA, Safta A, Terry AB, KL 2008 Long- term treatment of primary sclerosing cholangitis in children with oral vancomycin: an immunomodulating antibiotic. J. Pediatr. Gastroenterol. Nutr. 47: 61-67. http://www.ncbi.nlm.nih.gov/pubmed/18607270 However, PSC Partners Seeking a Cure will have an announcement about a new vancomycin trial in adult PSC patients soon. Please keep an eye open for this announcement; we'll try to post this on the PSC Partners Seeking a Cure web site (www.pscpartners.org) and the newsletter as soon as it becomes available. Best regards, Dave (father of (23); PSC 07/03; UC 08/03) > > Where can I get more information on this trial? > Is there a link that you can send me? > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 That's exciting that there will be a trial for adults soon ! Thanks for posting that. Hope you are doing well. Lori lucky mom blessed with triplets www.caringbridge.org/visit/bradenwild > > > > Where can I get more information on this trial? > > Is there a link that you can send me? > > > > Thank you > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2008 Report Share Posted November 12, 2008 Thanks ! Subject: Re: my thoughts on vancomycinTo: Date: Wednesday, November 12, 2008, 3:39 PM Hi "rcurrier1";As I understand it the vancomycin study at Stanford University is restricted to children and adolescents:Davies YK, KM, Abdullah BA, Safta A, Terry AB, KL 2008 Long-term treatment of primary sclerosing cholangitis in children with oral vancomycin: an immunomodulating antibiotic. J. Pediatr. Gastroenterol. Nutr. 47: 61-67. http://www.ncbi. nlm.nih.gov/ pubmed/18607270However, PSC Partners Seeking a Cure will have an announcement about a new vancomycin trial in adult PSC patients soon. Please keep an eye open for this announcement; we'll try to post this on the PSC Partners Seeking a Cure web site (www.pscpartners. org) and the newsletter as soon as it becomes available.Best regards,Dave (father of (23); PSC 07/03; UC 08/03)>> Where can I get more information on this trial?> Is there a link that you can send me?> > Thank you> Quote Link to comment Share on other sites More sharing options...
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