Our 10 year old daughter was diagnosed with PSC / UC (and possible AIH Overlap) back in August. We stubbornly refused to believe that it materialized out of nowhere and attempted to treat it with a gut-healing diet (and no meds) for two months. Unfortunately, 3 weeks ago we had to admit her to the hospital with severe bloody diarrhea and ALT levels above 1200 (they were below 200 a month earlier). They were planning to pulse her with steroids, but first needed to treat a c-diff infection in her colon that was causing all the diarrhea. We requested oral vancomycin as the antibiotic as we had read about the possible benefits with PSC. Surprisingly, as soon as they started the vanco her liver levels began to drop dramatically. She's almost through the 2 week order (has not had any steroids) and her ALT is below 200 and still dropping. We're meeting with the Dr next week to determine if she'll allow us to stay on the Vanco or insist that we shift to Immuran (her original treatment protocol that we had not yet begun).
Has anyone else had this kind of experience with Vanco? Was the improvement lasting and did you continue on the Vanco long-term? What did your liver specialist say?
Secondly, since about the same time we arrived in the hospital our daughter has begun to bloat in her midsection. She doesn't seem uncomfortable, but her belly just seems swollen from sternum to pelvis and side to side. I'm really concerned that this could reflect the onset of portal hypertension, but I can't imagine that her liver has sustained that much damage already (she's only 10…only been diagnosed since Aug…this is supposed to move slowly…etc etc). Has anyone seen this kind of bloating and could it be from antibiotics or another cause other than portal hypertension?
Thanks so much for reading and we'd really appreciate any thoughts that anyone has!
I also have PSC. My advise would be to be proactive and be sure that she is seeing liver specialists that are very familiar with these types of disorders. I had been to so many different physicians for so many years with wrong diagnosis etc. and am glad I was not afraid to step on toes and get second opinions. I also believe that this website is a good resource with good information. Their are people on these discussions with children going through the same thing as your daughter. You may want to read my discussion on "gluten free diet", several people have commented on successes they have had with dietary changes and probiotics. The doctors may not agree but the evidence is there with some of these stories.
Our daughter was diagnosed in March, she is seven. We are in the vanco study at Stanford but we live in texas.
Our dr here was not going to try vanco, period. But we persisted with lots of data and eventually traveled to Palo Alto to join the study.
So far, so good with her labs. It’s only month three. I have spoken to several parents with no problems in their children as far as any side side effects.
Dr Cox will put children straight on vanco with no other meds and has had some success.
Get ready to advocate for your child if you want to pursue further and get your hands on the published work from dr cox and dr Davies.
I know dr Davies is taking patients for a new arm of the vanco study she is doing.
Thanks so much for the note. We're in the process of registering with Dr Cox and hope to get up there before the end of the month (we live in Pasadena, CA). If you don't mind, I have a couple more questions...did your daughter's blood markers show auto-immune involvement (smooth muscle antibodies, high IGG levels, etc)? Our current specialist (highly regarded, but not a Vanco prescriber) is treating her with immune suppressants due to the auto-immune abnormalities and I wonder if Vanco is appropriate in these cases? Also, did your daughter present with ulcerative colitis when diagnosed with PSC? We seem to have both and our original Vanco prescription was for the UC (and very effective). Thanks again for your thoughts on this!
Eric
Brad S said:
Our daughter was diagnosed in March, she is seven. We are in the vanco study at Stanford but we live in texas. Our dr here was not going to try vanco, period. But we persisted with lots of data and eventually traveled to Palo Alto to join the study. So far, so good with her labs. It's only month three. I have spoken to several parents with no problems in their children as far as any side side effects. Dr Cox will put children straight on vanco with no other meds and has had some success. Get ready to advocate for your child if you want to pursue further and get your hands on the published work from dr cox and dr Davies. I know dr Davies is taking patients for a new arm of the vanco study she is doing.
Her igg levels were never elevated but has other markers like the smooth muscle antibodies,
and she was diagnosed in feb with uc/psc. It was uc/bloody diarrhea that led us the the gi doc. Go see dr cox and trust in him, he is a brilliant guy. I wished we lives closer to him than we do.