I know some of you probably are aware that I reside in Canada with my seven year old daughter, who was diagnosed at Sick Kids when she was three with Primary Sclerosing Cholangitis, Ulcerative Colitis and Kidney Disease.
I have read alot of posts on here and know that some of you are in similar predicaments. I wanted to ask if any of you reside in the United States and if so would you be able to recommend some good hospitals. I know CACTUSGIRL recommended the Mayo Clinic. My family and I are toying with the idea of possibly taking her to the U.S. to see if we can get a second opinion.
I would really appreciate any assistance I could get.
If I had a child sick with PSC I would take her to Stanford to see Dr. Cox, a pediatric gastroenterologist. He treats kids with PSC with oral vancomycin with simply amazing results. The improvement seen in these children will make you wonder why your doctors haven't tried vancomycin. If my boyfriend was still considered young enough to see a pediatrician, we would have been at Dr. Cox's door within a week of me finding these awesome results.
I wish you the best of luck! Get the care you need for your daughter and don't hesitate to do what you think is right for her and your family.
Thank you for your advice and the link. I will read it as soon as possible and may come back to you for more information.
I live in Can as well my son who is 16 was diagnosed with PSC and UC in Nov of 2012. I will be interested in how everything turns out with the second opinion.
Fish - we live in Can with a 17 yr old. 16 at diagnosis. we did take him to US to consult with Cox. he takes vanco now, at our request, I don't know if there are any other patients of his Canadian doc who take it. he's doing well. but we won't really know for another 10 years or so! Anyway, happy to talk offline if you send me a friend request.
I recommended Dr. Kenneth Cox at Stanford University for pediatric patients. An alternative is Dr. Yinka Davies at UC Davis. Also Dr. Cara Mack at Childrens Hospital of Colorado. All use Vanco as a treatment.
I agree with LeggyMeggie. I am working with Mayo docs on research but my daughter goes to Dr. Cox.
I must apologise for not being in contact. I am grateful to all your responses. I have just had to face alot of challenges and I know it may sound silly, but I couldn't seem to come online.
I know I contacted a couple of you and ask that you forgive me for my rudeness and will try to get in touch with you again. Each of you have been really grate.