Hello, my 5-year son was just diagnosed with PSC-IBD (UC) after liver biopsy (possible overlap syndrome with AIH). Been studying the scientific literature extensively, and was wondering if anyone has any recommendations for a physician in the St. Louis area, particularly one willing to consider oral vancomycin? Thank you so much.
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Hello,
My son was diagnosed last year at age 7. He sees a team at Luries in Chicago. We do our use Vanco currently but our doctors are open to it if they believe he needs it. My son also has UC/AIH. All are “under control” at this point.
We only see his doctors a few times a year so if you can’t find anyone in St Louis I would consider a trip to Chicago.
Good luck to you and your son. I know this is a trying time for you.
Hello StlBluejay.
I also live in stl and live with mild psc so far. I am 54 years old. When diagnosed i researched very much and came to the conclusion that Dr Flenkinstein was the best I could find. She has been wonderful! She is with Barns Jewish.
Feel free to message me if I can help. I do not always get my emails from this site, Although this site has been a Godsend!
Thank you very much.
Mark, thank you very much. I will likely be reaching out soon, as we are trying to gather as much information as we can. Unfortunately, it does not appear my son’s case is minor, as the biopsy indicated some scarring.
Simply reaching out to send a big virtual hug. I’m so sorry your son is having to face such a trial at the tender age of 5. I hope the little guy’s journey improves and you/your family find the support and encouragement to lead him. You got this! Xx
Understood.
Stay positive.
What is his first name? As I said, happy to be praying for him. And you…
Reed, my name is Derick. Been busy this week reaching out to physicians across country, including Mayo and Dr. Cox at Stanford. They have indicated we need a pediatric specialist and I believe I have what I need. But I will reach out soon, likely next week. Thanks so much.
Thank you so much