my 14 yr old son was diagnosed in March of 2016 with UC and PSC…went on Oral Vancomycin around May of 2016. Initially MRCP should beading and early PSC. Now gi dr called and said there’s possible narrowing of karge bile duct. (New MRCP done 2 days ago) He will be forwarding report to Liver specialist for opinion. Hoping beyond hope that report is wrong…but what can I expect if large bile duct is narrowing?
I meant narrowing of the ‘common bile duct’ …my husband spoke to dr. I believe the common bile duct with the pancreas. Thank you
With PSC that is the very thing that happens with the ducts. The ducts become beaded in appearance so it’s like small partial blockages throughout the ducts that slow down the flow of bile, which then is what causes itching, elevated liver enzymes and yes, it is damaging the liver cells as well. Please be sure you are seeing a hepatologist not a GI doctor for this next step I’m going to mention. The hepatologist will probably want to do a procedure called and ERCP. This is an endoscopic procedure where they go down through the throat, into the stomach and then into the common bile duct and up into his left and right hepatic ducts. They will inject dye to view any damage, they will probably do balloon dilation to open them up and allow the bile to flow, etc. Some doctors will insert stents although mine would never do so because they will become clogged eventually as well with the PSC. If they do, they will want to go back in in a few weeks or month and remove it most likely. As this is an invasive procedure you want an advanced endoscopist physician who does this day in and day out. This is not for your local GI who does your colonoscopies. He should do fine and will feel better as a result of it, although may be sore and a bit sick to his stomach for the first 24 hours. Please feel free to write back if you need further information. Take care.
PSC 2011 / Liver Transplant 7-2015
Thank you Mark for your quick response. The thing is my son just had blood work done on July 20th…no elevated liver enzymes except for ALT which was 34 and not that unusual for growing children. He’s not said anything about itching.
Albumin 4.2 (3.5-5.5)
Bilirubin 0.4 (0.0-1.2)
Alkaline Prosphatase 178 (107-340)
AST 30 (0-40)
ALT 34 (0-30) High
BUN/Creatinine Ratio 31 (9-27) High
BUN 14 (5-18)
Creatinine.45 (.49-.90) Low
Thank you !
Those numbers don’t really look that bad at all, but if they saw a blockage in the MRCP they may still want to do the ERCP to clear it up. It most likely is either the right or left hepatic duct, but I guess it could be the main common duct also. Hopefully the beading is not that bad with his enzymes being so low. I wouldn’t get too overly concerned at this point. If he does definitely have PSC please, please make sure you have him under the care of a hepatologist. That’s something you will never regret. Let me know if we can help further. Take care.
Although under the care of a gi, my son does see a hepatologist who is a partner in the same practice. The gi consults with the hepatologist and my son has seen the hepatologist 2x (1x in the hospital and then shortly after diagnosis.) The hepatologist has experience with psc…however I do not get the impression that it’s a lot of experience mainly because of the rarity especially in pediatrics.
We live outside of nyc in a populated area and the children’s hospital is very reputable…but it’s psc so it’s difficult finding an expert. I have tried to make an appt to see Dr Cox on the west coast and will try again. The problem was with my schedule. I did have the latest mrcp report sent out to Dr Cox in hopes that he will take my son as a patient.
I did panic when my husband told my about the telephone conversation he had with my son’s gi. I will let you know what the hepatologist says. We are suppose to be hearing from him today or tomorrow.
I could recommend some good doctors here in North Carolina if you need something closer to New York. All my care has been through Duke Medical Center.
But would the drs be pediatrics? That’s a problem…I hear about studies coming out of Mount Sinai Hospital in nyc but the drs are not peds…would love good ped/hep dr recommendations. Thank you for all of your help !!! Julie
I’ll make a call to one of my transplant coordinators and find out if they have a specialist in PSC Pediatrics and let you know.
Thank you, Mark
I have a dominant stricture in my common hepatic duct (just upstream from your son’s) that kept me in the hospital pre-vanco and it has been a complete non-issue for the past ~3 years while on vanco. I also had progressive worsening in imaging pre-vanco and no changes while on vanco. The changes could have happened during the three months prior to when Vanco kicked in. Imaging done at different centers can also explain why different things are found. If he is asymptomatic and if LFTs are normal, he is ahead of the game. Address the narrowing with your specialist and ask if it is suspicious. Ultimately, play the long game and see if things continue to progress and adjust treatment if necessary. Dr. Cox is a great resource.
I heard back from Duke. They have two pediatric hepatologists there that I am being told are excellent doctors. Dr. Megan Butler and Dr. Alisha Mavis. I will post below links to their profile page where you can call their appointment lines to get an appointment, etc. You should not have to have a referral although you need to bring copies of all your records, MRCP films, etc. If you do decide to come down and need some references for hotels near the hospital please let me know and I can give you some. I hope they will be able to help your dear son. They sure helped me. I am one year post transplant being diagnosed with PSC in 2011 although I think I had it much longer than that. These are excellent people at Duke and will treat you with the utmost respect. Best wishes to you and your family at this time. There is hope amidst these physical trials.
- Dr. Megan Butler Link
- For Dr. Alisha Mavis I can’t find her doctors page but she was recommended by one of my coordinators.
- I looked through the list of doctors and found a couple more that deal in Pediatric Hepatologly. Here are their links. I think though I’d start with Dr. Butler and go from there.
4 . Dr. Richard J. Noel
- Dr. Mary Boruta
- Dr. Reinstein
I cannot thank you enough. I spoke to hepatologist yesterday and when he compared the 2 mrcp’s, the latest one shows improvement. My son’s common bile duct is actually less narrow than it was on March 17, 2016. He has been on oral Vancomycin since May 11th. Hepatologist wants my son to continue with 500mg of vanco 3x per day, check labs after 1 month then reduce dosage to 500mg 2x per day. He will repeat mrcp in another 4 mos…(i believe he is following Dr Cox’s protocol).
I panicked yesterday when my husband told me that the mrcp showed "narrowing ". I interpreted that to mean more narrow. … However, was elated to hear hepatologist 's interpretation. Hepatologist warned that we can’t keep my son on vanco forever as he’s afraid of building resistance to the antibiotic . But I 'm hoping it may buy us some time until a viable treatment is found.
I will look into those drs from Duke. Even before i spoke to hepatologist, you calmed me down…thank you for caring about my son. I see you on this site helping people all the time. I will keep you updated.
Congratulations on your 1 year anniversary of your transplant.
Thank you jtb-looks like vanco is working…narrowing has lessoned. I panicked before speaking with specialist. I so appreciative of the people on this site. Julie
I heard back from one of my hepatoligists. Here’s his response. Perhaps it would help. I’d recommend Dr. Muir over any of the others. He’s the one that got me on transplant list and was my advocate to the transplant committee.
Thanks for your patience. Dr Muir recommends Dr Meghan Butler for pediatrics. Also, Dr Muir is credentialed to see teenagers, and so he could see them if the boy prefers to be seen in an adult clinic.
Please let me know if there is anything else I can do for you.
Maureen Lynch, PsyD, BSN, RN
Resource Nurse for
Dr. Andrew Muir
Elizabeth Goacher, PA-C
Wow! Thank you Mark!!
Glad I could help Julie. I believe in these people at Duke. They sure saved my life when I was in such great straits. God bless you and your family at this time. Encourage your son to just live life to its fullest amidst this diagnosis. Don’t constantly worry about it. It will let you know its there from time to time but you can’t let it stop you from going on with all the plans of life. We must always have hope amidst our trials.