My 14 year old son appears to get worse with every blood test. Liver enzymes up. Blood ammonia up. Now on lactulose. My son’s first appt with hep dr has been moved up from
June 2 to May 19. Anyone know if any doctors in the Chicago area are treating PSC with Vancomycin? My son’s dr might be open to it but I haven’t had a chance to run it by him. Just wondering what to expect when I do, and if anyone in the Chicago area is already prescribing it. I will run it by my son’s doctors when I see then next week.
Sorry, no experience with doctors in Chicago.
Most hepatologists are not up to date on the latest PSC trials and research, and are reluctant to get on board with any treatment that they do not understand and are unfamiliar with. Your job is to become the PSC-Vanco subject matter expert and educate the doctor. Provide printouts of all of the Cox trials, case studies, and reports. In particular, provide the Immunomodulatory and Long-term Treatment trials. Be prepared to summarize ("all of the children without cirrhosis normalized; all of the others improved GGT"). Understand the theory for why oral Vanco works to stop PSC (by boosting gut Tregs that are otherwise deficient in cases of PSC). Know the difference, particularly regarding side effects, between Vanco administered orally vs intravenously (many doctors confuse the two). Note that there were no side effects or cases of VRE on any of the pediatric patients (some had been on as long as 10 years). Explain that the remote social risks of bacterial resistance are outweighed by the potential benefit of avoiding or delaying transplant.
And if it comes down to it, try again with a different, more open minded doctor.
It also wouldn't hurt to call or email Dr. Cox and present your son's case for recommendations. He has helped me out numerous times with various questions and concerns.
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Wow! Excellent info! Thank you!
JTB gave you great information. I would also add if the doctor is hesitant, ask them if they will do it for a trial period just to see how he responds.
Have you had a chance to look at the Children's PSC Foundation website? It has a lot of great information.
Good luck!
Yes. I found it several days ago. I have emailed them and left messages and have not been able to get in touch with anyone.
Hi Rivermouse,
I have a thirteen year old soon. It is bad enough having PSC as an adult, but it would be so much worse if it were my child. You are in my thoughts and I hope your son gets the care he needs.
If you don't have luck in the Chicago area, would you consider going to Sacramento and seeing Dr. Yinka Davies? She's a pediatric GI who worked with Dr. Cox and uses vancomycin to treat PSC with great results.
Also, there is a PSC Facebook page (PSC Partners Seeking a Cure) and there are quite a lot of parents on it. They may know of doctors in your area.
Crewmom
Rivermouse -
I, too, am in the Chicagoland area. I am sorry to say but forget finding anyone. We flew to Arizona. Mayo in Phoenix. Also, the Mayo in Rochester is a good option, but I had such a hell of a time trying to actually get in that I said screw it and went all the way to Phoenix. They are fantastic. Dr. Lindor is out there, and Dr. Aqel is also very, very good. From there, there is a compounding pharmacy in Libertyville, IL that will make up the doses for you at about $200 bucks for a 2-week stint, depending on dosage.
GOOD LUCK!