Advise: Second Opinion

My daughter is about two years into her diagnosis of UC. We've tried lialda and steroids as well as canasa suppositories without prolonged remission; she started Simponi in November. She got some relief but now is having mild symptoms. We have contacted our GI doctor but I'm ready to get a second evaluation to make sure we are on the right track. We live in Pittsburgh; our doctor is with the AHN group so UPMC would be out of network; I'm OK with that but the GI community here is very similar---doctors at both places trained at the same places and have similar outlooks. If I'm going out of network I may as well choose the absolutely best clinical place possible. What would that place be? I'd especially be interested in places that are trying out fecal transplant therapy. Thanks; any advice would be greatly appreciated.
Paul

No legitimate medical facility (outside of a possible pediatric trial) is trying out FMT. There is FDA clearance for the experimental use of FMT in c-diff treatment. Period. That's it. Nothing for UC.

You can find some "spas" offering FMT colonic weekends for about $5000 plus, but you said you wanted "the best clinical practice possible."

You can try to find an integrative medicine doc if you think that the mainstream treatments are ineffective. You can look for a GI practice associated with a university research center, and may be running several clinical trials, as well have nutritionists on staff.

She's fairly young, right? I don't have a specific recommendation, but if either of my kids end up with UC, I want them to see a pediatric GI. It seems the disease course can be a bit different for kids, and I'd also want to deal with someone who has good experience with how the different meds can affect their growth and development. Have you looked into CHOP at all?

Paul, I'm also in Pittsburgh and recently switched from private practice doc to Dr. Miguel Regueiro at UPMC...same group as Joanna. I've become more complicated and am impressed with him.

Also, if she is peds patient, I can give you names at CHP. I work there and also have a co-worker whose son has crohn's and uses their IBD docs.

Thanks everyone for replies! I'm a medical person but you all offer the type of practical info you just can't find elsewhere. platinumpixie and Joanna-- I especially appreciate the local info. I work at AHN so I can navigate the bad parts pretty well (WPH is much better than AGH imho); I actually spoke with Dr. Requiero over the phone; he was super nice; he trained the guy my daughter sees, and a year ago he thought our treatment plan was sound. I spoke with one of our GI surgeons who I respect and who has worked with both groups of GI docs (AHN and UPMC)--his opinion was that they were really equivalent and if it was his kid and he thought things were going down hill he'd try cleveland clinic--I don't know if that was because of some UC expertise there or just cause of their general reputation--that was why I threw the question out here.

Anyway my daughter is 19; she's in college; she's functioning pretty well. I worry excessively and everytime there's a bump in the road I am ready to call in the national guard. Our GI got back with us and thinks this is not even a flare, maybe just some smoldering disease; he wants her to try some canassa again and give the simponi more time to do its thing.

thanks again for replies--I truly appreciate it!
Paul