I have been reading radiologic findings that are supposed to be indicators of PSC. My son’s report does not mention beading. Is this a conclusive Dx without beading? We are seeing a hepatologist June 2, but am considering getting another opinion at a second institution. My mom was misdiagnosed with pancreatic cancer and we all wept and grieved and when she went in for her Whipple, she was under a very short time and surgeon came out. I thought she had died in the table because I couldn’t figure out why he was walking towards us to talk to us after a short time and he said the biopsy and imaging findings were WRONG! Her pancreas was obviously healthy! And her original Dx was at a major teaching hospital. How will I know how to be certain that a Dx is conclusive?
A second opinion is key for a firm diagnosis. I had 2 MRCPs that were inconclusive (no beading). Went to a hepatologist and finally got an an ERCP to confirm the PSC. Also, bloodwork can say a lot about what’s happening inside the bile ducts and liver.
ERCPs are the “gold standard” for a PSC diagnosis. They also carry a 5-7% risk of pancreatitis.
The bloodwork is apparently consistent with PSC. I was reading that ERCP is not recommended for children because of the risk. We are seeing the hepatologist June 2. Also I decided to go to other institutions for second opinions. What is the leading institution in the country for pediatric liver diseases ? I’m sure we are already at An institution in the top ten at least, but I want to be sure of the Dx.
The only place that comes to mind is Stanford, where dr. Cox does the Vanco studies…
I have emailed the contacts about the Vanco and haven’t heard back yet, but will pursue that and I think we will go to Boston Children’s Hospital too. You were sick for quite some time before your final Dx, weren’t you?
I am sorry to hear that your son may have this yucky disease. The good news is kids seem to respond well to Vancomycin.
Yinka Davies in Sacramento is very experienced with pediatric PSC. She worked with Dr. Cox at Stanford before she went to Sacramento. She does use Vancomycin as a treatment if warranted.
Best of luck!
You could also check in with the doctors at UC DAVIS. They work closely with the Stanford transplant team.
I cannot remember the name of the Drs. that are doing the PSC/PBC studies at Davis. I just remember one man and one woman. The male doctor holds seminars around the South Bay and will actually take blood from folks that let him,at the seminars, to use in his studies.
I am sorry about the diagnosis you got for your son. I know that you will be his lead support and help him navigate this disease. I am sending you prayers and best wishes.
Thank you everyone.
You were sick for quite some time before your final Dx, weren’t you?
Actually, I have been asymptomattic for many years, just now getting itchy, urq pain, and fatigue. Just need to find the drug to halt this sob in its tracks!!
I am so sorry to hear you and your family are having to go through this!
Our child is 10 and was diagnosed at 8. He was diagnosed by a GI specialist, whose field of study and research happened to be PSC! However, we made sure he had consulted with a second specialist who was had more experience and had been involved directly with other PSC patients as well. The bloodwork and liver biopsies were what confirmed the PSC in our child. The MRCP was inconclusive in our son's case, and was actually done twice, about 8 months apart, but both could provide nothing firm. For the liver biopsy, our specialist consulted with two pathologists to make sure they were both in agreement with what he felt he was seeing indicated from the biopsy.
While specialists may be great or not so great, what matters is that you as the parent ask EVERY SINGLE QUESTION you want to ask. If you don't get a clear answer, ask it again. Be firm while calm when you say to a specialist that you want to make absolutely sure they are correct, and the only way to do that is to consult with a second specialist, or even a third. You are the only one who will advocate for your child, so you have every right to ask a second opinion, ask for explanations, question the meds they want to put your child on, and so on.
I asked our specialist that same question about the most advanced facility for PSC research, and he also mentioned the Vanco study as being the place most focused on PSC treatment. You can email Dr. Cox or a Dr. Shamita Shah directly. They did respond when we emailed them.
I myself am watching the Nor-urso studies. Phase 3 trials are beginning to be set up by the end of 2015, although the aim is of course adult patients. The Vanco is pretty interesting, but I need to see proof of not just numbers come down, but the time to transplant significantly delayed and/or the tissue in the liver improving for us to consider Vanco as a treatment. There seems to be some success, but many unknowns as well. Also, our son is well into the disease, and much success seems to come with Vanco if the patient is in the earlier stages. I have heard some debate about whether patients build tolerance to Vancomycin as well, but still the results seem promising at this point.
We too know those feelings of fear, uncertainty and frustration. We are thinking of you and your son.