Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Hello All, The following is an email I just got from Traci, the mother of 6-year-old Abby whose PSC went into remission after treatment with oral Vancomycin. This provides more detail than the previous email. Dr. Yinka Davies works at Sutter Medical Group in Sacramento, CA. Traci would love to communicate with other parents of children with PSC. Her phone number is at the end of the email. (Sacramento) Hi All! I am Traci , Abby's mom that mentioned in her email. First, I would just like to say thank you to for taking the time to put Abby's story out there. Abby was suffering from daily fevers and her legs were so painful from erythema nodosum nodules (apparently more common in children) that she spent much of her kindergarten year on crutches or off of her feet. She truly has " recovered " and is now participating in all regular activities since beginning on the Vanomycin trial with Dr. Yinka Davies. Just last week she had her labs drawn again and ALL of her labs came back normal. We feel so thankful to have met Dr. Davies and to have become apart of this trial, I feel a responsibility to get the word out. Abby was the 17th child in the trial. According to Dr. Davies, all of the other children have responded like Abby and continue to stay in " remission " (I don't know if that is the correct term?) while on the medication. Larry, I was sorry to hear that the Vanco upset your stomach. Like you said, maybe that is a " weird " side effect. From what Dr. Davies has explained to me the vanco stays in the colon so the patients don't build a resistance to it which is usually the concern with long term antibiotic use. Abby has had no side effects from day one. Vanco is costly, as Larry mentioned. At Safeway, Abby's runs $6,000.00 a month. Dr. Davies explained that a liver transplant cost over 1.1 million and therefore the Vanco sounds like a bargain to the insurance companies! She has never had a PSC patient denied. The ten year old case report that I think wrote about, is what Dr. Davies uses if she runs into trouble with an insurance company. If any of you are interested in looking it up, I'll tell you how to find it. Forgive me for not just attaching it...i tried but ran into trouble. The computer and I are just getting used to each other! Google...Stanford clinical trial on Oral Vancomycin for PSC and the case report by Dr. and Dr. Kathleen will come up. Dr. Davies just wrote another paper that was accepted by a medical journal. She told me she would keep me posted as to when it gets published and I'll send the info on to all of you. For any of you who have already had a liver transplant, Dr. Davies has also been successfully treating a girl with Vanco who had a liver transplant 3yrs ago. They strongly believe that it has kept her new liver from failing, and again she has written a paper about this. Dr. Davies feels that Vanco is important for adults and only due to her licensing with peds is she not pursuing the adults. However, she said she would work with PSC adults by coordinating with their primary physicians to get the Vanco. This has given our family so much hope that I want others to be able to pursue this as well. Please spread the word if you hear of any children suffering with PSC. It is so rare in children it is difficult to locate children for the trial. Also, if any of you have heard of a support group for parents of children with PSC, would you please pass it on to me. I have not been able to find one! I would love to talk to anyone who has questions about this, so please feel free to call me. Sincerely, Traci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 I find it interesting that the doc is using such a strong medication like this as an ongoing treatment. I am happy you have has such a positive experience, but upset stomachs area a pretty common side effect that I see in pt's all the time. Expecially the more doses they recieve. Also with the increase of Vancomycin resistant entercocci VRE. That is life threating for people with compromised immune systems. And even health individuals have a difficult time overcoming. I don't know what is meant by people not growing resistant to vanc. but the flora in the intestines grows resistant to it. PSC 5/07 Listed > > Hello All, > > The following is an email I just got from Traci, the mother of > 6-year-old Abby whose PSC went into remission after treatment with oral > Vancomycin. This provides more detail than the previous email. Dr. > Yinka Davies works at Sutter Medical Group in Sacramento, CA. Traci > would love to communicate with other parents of children with PSC. Her > phone number is at the end of the email. > > (Sacramento) > > Hi All! > I am Traci , Abby's mom that mentioned in her email. First, > I would just like to say thank you to for taking the time to put > Abby's story out there. Abby was suffering from daily fevers and her legs > were so painful from erythema nodosum nodules (apparently more common in > children) that she spent much of her kindergarten year on crutches or off of > her feet. She truly has " recovered " and is now participating in all regular > activities since beginning on the Vanomycin trial with Dr. Yinka Davies. > Just last week she had her labs drawn again and ALL of her labs came back > normal. We feel so thankful to have met Dr. Davies and to have become apart > of this trial, I feel a responsibility to get the word out. Abby was the > 17th child in the trial. According to Dr. Davies, all of the other children > have responded like Abby and continue to stay in " remission " (I don't know > if that is the correct term?) while on the medication. > Larry, I was sorry to hear that the Vanco upset your stomach. Like you said, > maybe that is a " weird " side effect. From what Dr. Davies has explained to > me the vanco stays in the colon so the patients don't build a resistance to > it which is usually the concern with long term antibiotic use. Abby has had > no side effects from day one. > Vanco is costly, as Larry mentioned. At Safeway, Abby's runs $6,000.00 a > month. Dr. Davies explained that a liver transplant cost over 1.1 million > and therefore the Vanco sounds like a bargain to the insurance companies! > She has never had a PSC patient denied. > The ten year old case report that I think wrote about, is what Dr. > Davies uses if she runs into trouble with an insurance company. If any of > you are interested in looking it up, I'll tell you how to find it. Forgive > me for not just attaching it...i tried but ran into trouble. The computer > and I are just getting used to each other! > Google...Stanford clinical trial on Oral Vancomycin for PSC and the case > report by Dr. and Dr. Kathleen will come up. > > Dr. Davies just wrote another paper that was accepted by a medical journal. > She told me she would keep me posted as to when it gets published and I'll > send the info on to all of you. > For any of you who have already had a liver transplant, Dr. Davies has also > been successfully treating a girl with Vanco who had a liver transplant 3yrs > ago. They strongly believe that it has kept her new liver from failing, and > again she has written a paper about this. Dr. Davies feels that Vanco is > important for adults and only due to her licensing with peds is she not > pursuing the adults. However, she said she would work with PSC adults by > coordinating with their primary physicians to get the Vanco. > This has given our family so much hope that I want others to be able to > pursue this as well. Please spread the word if you hear of any children > suffering with PSC. It is so rare in children it is difficult to locate > children for the trial. > Also, if any of you have heard of a support group for parents of children > with PSC, would you please pass it on to me. I have not been able to find > one! > > I would love to talk to anyone who has questions about this, so please feel > free to call me. > > > Sincerely, > Traci > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 I find it interesting that the doc is using such a strong medication like this as an ongoing treatment. I am happy you have has such a positive experience, but upset stomachs area a pretty common side effect that I see in pt's all the time. Expecially the more doses they recieve. Also with the increase of Vancomycin resistant entercocci VRE. That is life threating for people with compromised immune systems. And even health individuals have a difficult time overcoming. I don't know what is meant by people not growing resistant to vanc. but the flora in the intestines grows resistant to it. PSC 5/07 Listed > > Hello All, > > The following is an email I just got from Traci, the mother of > 6-year-old Abby whose PSC went into remission after treatment with oral > Vancomycin. This provides more detail than the previous email. Dr. > Yinka Davies works at Sutter Medical Group in Sacramento, CA. Traci > would love to communicate with other parents of children with PSC. Her > phone number is at the end of the email. > > (Sacramento) > > Hi All! > I am Traci , Abby's mom that mentioned in her email. First, > I would just like to say thank you to for taking the time to put > Abby's story out there. Abby was suffering from daily fevers and her legs > were so painful from erythema nodosum nodules (apparently more common in > children) that she spent much of her kindergarten year on crutches or off of > her feet. She truly has " recovered " and is now participating in all regular > activities since beginning on the Vanomycin trial with Dr. Yinka Davies. > Just last week she had her labs drawn again and ALL of her labs came back > normal. We feel so thankful to have met Dr. Davies and to have become apart > of this trial, I feel a responsibility to get the word out. Abby was the > 17th child in the trial. According to Dr. Davies, all of the other children > have responded like Abby and continue to stay in " remission " (I don't know > if that is the correct term?) while on the medication. > Larry, I was sorry to hear that the Vanco upset your stomach. Like you said, > maybe that is a " weird " side effect. From what Dr. Davies has explained to > me the vanco stays in the colon so the patients don't build a resistance to > it which is usually the concern with long term antibiotic use. Abby has had > no side effects from day one. > Vanco is costly, as Larry mentioned. At Safeway, Abby's runs $6,000.00 a > month. Dr. Davies explained that a liver transplant cost over 1.1 million > and therefore the Vanco sounds like a bargain to the insurance companies! > She has never had a PSC patient denied. > The ten year old case report that I think wrote about, is what Dr. > Davies uses if she runs into trouble with an insurance company. If any of > you are interested in looking it up, I'll tell you how to find it. Forgive > me for not just attaching it...i tried but ran into trouble. The computer > and I are just getting used to each other! > Google...Stanford clinical trial on Oral Vancomycin for PSC and the case > report by Dr. and Dr. Kathleen will come up. > > Dr. Davies just wrote another paper that was accepted by a medical journal. > She told me she would keep me posted as to when it gets published and I'll > send the info on to all of you. > For any of you who have already had a liver transplant, Dr. Davies has also > been successfully treating a girl with Vanco who had a liver transplant 3yrs > ago. They strongly believe that it has kept her new liver from failing, and > again she has written a paper about this. Dr. Davies feels that Vanco is > important for adults and only due to her licensing with peds is she not > pursuing the adults. However, she said she would work with PSC adults by > coordinating with their primary physicians to get the Vanco. > This has given our family so much hope that I want others to be able to > pursue this as well. Please spread the word if you hear of any children > suffering with PSC. It is so rare in children it is difficult to locate > children for the trial. > Also, if any of you have heard of a support group for parents of children > with PSC, would you please pass it on to me. I have not been able to find > one! > > I would love to talk to anyone who has questions about this, so please feel > free to call me. > > > Sincerely, > Traci > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 > > I find it interesting that the doc is using such a strong medication > like this as an ongoing treatment. I am happy you have has such a > positive experience, but upset stomachs area a pretty common side > effect that I see in pt's all the time. Expecially the more doses > they recieve. > > Also with the increase of Vancomycin resistant entercocci VRE. That > is life threating for people with compromised immune systems. And > even health individuals have a difficult time overcoming. I don't > know what is meant by people not growing resistant to vanc. but the > flora in the intestines grows resistant to it. > > PSC 5/07 Listed > Hi , I will ask Traci to check with her doctor about this and post her response. I know that they have been using oral vancomycin on children at Stanford University for about 10 years so I am surprised that Dr. Davies did not mention this risk to Traci. Traci did tell me that Vancomycin is usually administered by i.v. but they use only oral Vancomycin to treat PSC. (Sacramento dx UC/PSC 2001) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 The pts I deal with are on iv vanc. and I don't know much about oral vanc. except that it is not well absorbed orally and that is why they use the IV vanc for serious infections.. But with all the increase of these " super bugs " It would be interesting to hear what the docs thoughts are. Thanks. (sorry for the double post earlier, I guess I hit the send button twice) Thanks, PSC 5/07 Listed > > > > I find it interesting that the doc is using such a strong medication > > like this as an ongoing treatment. I am happy you have has such a > > positive experience, but upset stomachs area a pretty common side > > effect that I see in pt's all the time. Expecially the more doses > > they recieve. > > > > Also with the increase of Vancomycin resistant entercocci VRE. That > > is life threating for people with compromised immune systems. And > > even health individuals have a difficult time overcoming. I don't > > know what is meant by people not growing resistant to vanc. but the > > flora in the intestines grows resistant to it. > > > > PSC 5/07 Listed > > > Hi , I will ask Traci to check with her doctor about this and > post her response. I know that they have been using oral vancomycin > on children at Stanford University for about 10 years so I am > surprised that Dr. Davies did not mention this risk to Traci. Traci > did tell me that Vancomycin is usually administered by i.v. but they > use only oral Vancomycin to treat PSC. > > (Sacramento dx UC/PSC 2001) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2008 Report Share Posted February 9, 2008 Dear ; Wouldn't it be a good idea for the Stanford group to join the STOPSC registry? https://web.emmes.com/study/psc/index.html Both UC Davies and the University of San Francisco are already participating in the registry (click on " Adult and Pediatric Centers - Participant Contact List " on this page): https://web.emmes.com/study/psc/contact/contact.html Might this resolve the Stanford's group difficulty in locating children for the trial, and might it facilitate comparing responses of those patients taking vancomycin versus those who are not taking this antibiotic? Might this also facilitate communication between pediatric PSC groups, and between adult and pediatric programs with respect to this potential therapy? If the goal is to spread the word about vancomycin amongst PSC researchers, then this would be the most direct approach for Drs. and Davies to pursue? The oral vancomycin study from 1998 is this article: KL, KM 1998 Oral vancomycin: treatment of primary sclerosing cholangitis in children with inflammatory bowel disease. J. Pediatr. Gastroenterol. Nutr. 27: 580-583. http://www.ncbi.nlm.nih.gov/pubmed/9822326 The full text is available here: http://www.jpgn.org/pt/re/jpgn/fulltext.00005176-199811000-00015.htm 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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