My son who is 21 has been seeing gastroenterologist since he was 11 yrs old and was diagnosed with ulcerative colitis which is in remission. He was then diagnosed with PSC when he was 16 yrs. old. He has now changed doctors from pediatric gastro to an adult gastro. Should he be seeing a Hepatologist also?
I would say yes - my son has the same joint conditions but both were diagnosed at the same time. However his PSC is very mild so we only see the liver team once a year (the gastro team take the lvier bloods every 3 months when we go for our uc appts and pop them off to hepatology) It may be that the levels are very low and your gastro may have enough knowledge of psc to not have referred them over as yet - but definitely definitely ask the question of your gastro as PSC can affect the liver so a hepatologist should be involved even on the periphery. Mind you it is possibly a very good sign that they arent if the liver blood tests are of a certain level. My son is nearly 14 so a similar age to yours, let me know how you get on, good luck!
I agree with rcmoore about having both gastroenterologist and hepatologist. The gastro has some knowledge of liver disease and function, but not like a hepatologist who went through a 2-year fellowship just to study livers and liver disease. There are also great differences in the regular testing of adult vs. pediatric PSC patients, so I definitely would say it's a good idea to have a hepatologist on your team of caregivers. PSC is a pretty rare disorder and when I get sick, I have to go to the ER where the Transplant Center is that I'm connected to. Otherwise, the doctors know nothing about the disease and don't understand the need for immediate antibiotic treatment if cholangitis is suspected. It moves to sepsis so fast that you have to stay on top of it. So you need to be connected to some place where you can feel assured you will get the best and most definitive care when your son needs it. I have a hepatologist and don't know what I'd do without her.
MY GI handles my Crohn's AND bile ducts. My Hepatologist takes care of the liver and PSC. Also, my Hepatologist is in the Transplant Department. Perhaps that is why...they like to follow us.
I don't know about the rest of us...my Hepatologist did a liver biopsy. I don't know if the GI doctors do that. I was told by my GI to MAKE SURE I had a Hepatologist for my PSC.
Mona
Thanks for the replies. I will pursue getting him a Hepatologist. He has had 2 liver biopsies. The first one when he was diagnosed with PSC and that one showed mild scarring in the liver. The 2nd one was just in August and that one showed that the scarring went from mild to moderate scarring in 5 years. (no cirrhosis) His liver enzyme numbers are higher then they should be (200-450) they tend to go up and down. In August he went thru all the necessary tests to check out if things were progressing for his ulcerative colitis and PSC (colonoscopy, endoscopy, ultrasound, MRI, blood test, liver biopsy) All this was also checked out because he gets gut pains like once to twice a week. GI doctor thinks it is some kind of reflux - and told him to take prilosec. I hope that is all it is. Tests didn't show anything else to explain why he is getting these.
Also his new GI doctor is trying to keep on top of things by telling him to get an ultrasound or MRI alternating every 6 months plus blood work. (his concern is to keep an eye out for progression or anything abnormal that would show like cancer.
great question, thanks for sharing. it will help others. :)
Do ask your doctor about trying vancomycin. Stanford has researched and seeing great improvements on PSC patients. My own daughter is taking vancomycin.
http://stanmed.stanford.edu/2011spring/article6.html