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Ulcerative Colitis
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Posted 4/25/2012 8:45 PM (GMT 0)
I had a telephone consult with Dr Cox at Standford whose work is discussed in this article:

http://stanmed.stanford.edu/2011spring/article6.html

I had passed this article on to a mom whose daughter had a UC/PSC dx at age 4 and at 11 had been in and out of hospital and was about to have a colectomy. 6 weeks into her treatment with vancomycin she's in remission! I hadn't thought about this for my daughter because (thank GOD) she does not have PSC but after hearing about this other girl's progress I thought I'd give it a shot.
Dr Cox was extremely kind, called us and answered all of our questions. He is having incredible success with children who have UC/PSC and mixed results with UC patients. He advised us to try vanco at 50 mg/kg for a month before giving up. At a month, either give up or bump the dose and see. He says he does not know why it works and he is working on it. For some reason, it works. My daughter had been given vanco at a lower dose by her GI. If our current treatment doesn't work (hopefully it will) we will try this next.
He is willing to consult with GIs if they wish.

He also said they are doing a trial on the SCD diet and they are seeing excellent results with CD and mixed with UC. So, look for this in the future.

I don't know if anyone is interested if this but for those who are, it might be worth exploring. He said of course there was a potential risk of developing resistance with vanco but after reaching remission the idea is to slowly reduce the dose to a relatively low maintenance one. He has not had any issues appear in the patients he's treated with this so far and some have been on for over a decade.

If anyone tries this, please email me or post here...
Posted 4/25/2012 9:15 PM (GMT 0)
Hey K, we used vanco for cdiff at much higher doses....over and over again. Jack built a resistance to it eventually, so yes, thats a concern. In fact, we stopped the vanco for the last time the day before his first FT (scope). The GI showed us pix of his colon consumed with cdiff infection and severe UC. Within days, the FT cleared him of his cdiff and put his UC into remission. He has also survived 5 rounds of abx since then for strep throat...which we can't believe. Not to get off point here, but yes, I'm not surprised Vanco has put people's UC into remission. IMO, this entire mess is the result of an altered gut flora, from an infection that has passed but triggered the cycle of inflammation....OR, still remains as an underlying infection. That said, all the abx and pbx treatments that are helping UCers is probably not a coincidence. After hearing your post, I think this would support doing the Vanco and finishing up with an FT protocol to seal the deal (hopefully).

Didn't mean to ramble on, but l hope and pray little S can find something to work for her.
Posted 4/25/2012 9:19 PM (GMT 0)
Hey,
Yes, he said he was having mixed results with just UC ranging from miraculous to none at all but excellent results with PSC/UC for some odd reason. He doesn't know. I agree. I hope what we're doing works (understatement) but if not, I will try this next followed again by an FT protocol. Just wanted to put this out there as if it helps one person then it's worth it. For those who prefer to experiment with abx vs immuno modulators or to those who've tried everything, might help. Who knows?
s
Posted 4/25/2012 9:35 PM (GMT 0)
What is PSC?
Posted 4/25/2012 9:42 PM (GMT 0)
It's a disease of the liver disease of the bile ducts. Until now there's not been any treatment and usually leads to transplant. I don't know too much about it other than it's closely related to UC, autoimmune and no good treatments. Maybe someone else will have more info?
Posted 4/25/2012 10:01 PM (GMT 0)
Although my son was classified as steroid dependent, twice last year when vanco was introduced along with IV pred to help his flare there was immediate improvement. Both times he only did 10 day courses of vanco and was on about 37mg/kg. Before starting FT in early December he was on vanco and IV pred. It certainly sounds like a viable future treatment for my son if needed.
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