Thanks to everyone who helped me yesterday. My 14 year old son was Dx’ed with PSC today with possible overlap of Autoimmune Hepatitis. Dr sending us for a second opinion.
http://www.childrenspsc.org. Look up “the children” In the navigation bar. Some great success stories with vanc. You are not alone
I looked with those search terms and I didn’t see anything encouraging. I am wondering what I am missing. The doc said every bile duct inside and outside is diseased. We are planning two vacations at this point- to visit his two dream destinations before he gets sicker. If you could point me in the direction if the encouraging stories I would sure appreciate it.
Note that vancomycin is not a cure, but it may prolong his liver until another treatment is found.
The initial shock is devastating. (I was formally diagnosed last week) a week later, I feel way better, I am an active informed patient that will persue every avenue to give my self the best treatment available. With confidence comes security.
The original Vanco kids are now 10+ years on the treatment with no sign of disease progression. It isn't a cure, but in many cases can unwind the existing damage and keep PSC in full remission as long as treatment is maintained.
Thank you for posting those! I am looking into that!