Hi flyingcoho,
My son was treated at Vancouver child’s hospital 4 years ago. My son went on urso and
I asked that he go in Vanco. My request was
Granted . My son has been doing quite well these last 4 years and is entering his 4 year of
University next month.
I would be happy to connect with you to discuss further.
Charmaine
Hi Charmaine, thank you for connecting. I’m so glad to hear your son is doing well! Who was your son’s doctor at children’s? Has your son had any side effects on the Vanco, or ever had a flare? Has his disease progressed at all? We are hoping to connect with our sons doctor this week. Please feel free to PM me if you prefer.
Hello again. My son has had his PSC for 12 years, and in that time his liver condition has worsened, that is true. But so far he has lived a normal life. The doctor told us that his disease will end with a liver transplant. A few months ago my son decided to change his diet and start with Dr. Seignalet’s diet. He is now feeling better. Soon he will have a new blood test, and then we will be able to assess whether the diet is working.
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Hi Flyingcoho, I’ve been following your thread and just want to speak up briefly now that I see your attention is on Vanco. There is so much good and alternative advise to help people on this site, I respect it all, but I can speak for Vanco from personal experience and I would be remiss if I didn’t throw in some emphasis said by others that it deserves your focus. Note that that it remains “medically unproven” by medical standards (a decade of multiphase, placebo controlled trials, etc. is necessary for on label use), expensive and a bourdon to insurances, and contraversial since it is a controlled antibiotic - these are the explanations why it is rarely mentioned from doctors and they change the subject when brought up (often it is by hosptital policy, risk mitigration to say “not until fully proven”). Current sufferers can’t wait for that proof. You have to sell Vanco to the doctors not the other way around. Be firm on it. In the addition to the medical papers on Vanco for PSC treatment, read every thread on this forum where Vanco is mentioned - there is as much information for you in here than you can get in the published papers - sometimes more helpful advice. So I don’t have to type it again, see this one of mine with links to medical Conference Q A with Ken Cox posted by JTB in which parents of remmissioned kids get up to advocate for approval of the drug. Also a website of parents who are trying to overcome the hurdles to get attention to Vanco as an orpan drug. Go to your Doc well armed.
Thank you Rjm much appreciated
Still playing with link function, this is post I was referencing…
Great information and excited to hear how this diet impacts his health!! Best of luck to him!!
Thank you for this info!!
Thank you!!!
Thank you so much! Meeting with Dr tmrw so definitely will talk to him about this!!