I think the key is to be your own advocate (or your child's) and educate yourself on the latest research. Doctors may not always have time to stay up on new 'experimental' treatments and are not willing to prescribe treatments that are not yet universally accepted. They all have extremely busy practices and will follow the accepted treatment protocol for a particular disease. This is the safest for them given our litigious society. That said, there is an increasing interest in OV treatment for PSC patients and in understanding why it seems to work so well for some.
I had to change doctors to get my daughter treated with OV, and even then, OV was not the new doctor's treatment choice. Now, given my daughter's incredible success on OV none of her team (she has 3 docs) recommends changing her treatment. I would never consider taking my daughter's health out of her doctors' care nor do I do anything without asking permission and advising all members of her team. I manage the information flow between her docs and suggest/request certain options that they may or may not accept. I research everything before I ask one of them so I do not waste their time. I think if you are respectful and knowledgeable, doctors will not mind being challenged with new treatment options and will even appreciate your inputs.
We can't get ANY of the doctors at UAB to use oral vanc long term. It isn't fair. =/ (Remember me Cactusgirl).
Seuss (Phillips mom) said:
My son has had a liver biopsy and his liver enzymes were elevated to as hight as 500 for 1 whole year. The liver enzymes have been normal for the past year while on URSO. He sees Dr. Roman Perri at Vanderbilt University in Nashville. I have talked our doctors about Vancomycin but they are reluctant to place him on an antibiotic long term.
Cactusgirl said:
As I mentioned my daughter went through same testing for parasites. She is now on oral vancomycin (OV) and no other meds for her UC or PSC.
You said that your son may have small duct PSC. On what basis do you believe this to be true? Has he had an MRCP or biopsy? Are any of his liver biochemistries abnormal other than eosinophils? The itching may be progression of the PSC if that is what he has. What team of docs does he have? Are they familiar with Dr. Kenneth Cox's vanco treatment protocol?
There are a number of docs who are now prescribing vanco. If you are interested in names let me know. Stanford Univ is recruiting for adult and pediatric trials using vanco.