I have previously reported on the good blood test results for my son (now 6 years old) after being diagnosed with PSC/IBD last summer and going on vanco. Update on 5 Year Old Son (UC-IBD) and Vanco
He also recently good results on a liver elstography, which showed “Shear wave elastography of the liver reveals an average tissue stiffness of 1.70 kPa, below the usual normal adult range for an F0 classification (2.0-4.5 kPa). Maximum tissue stiffness is 3.78”
Today he obtained an abdomen ultrasound, which contained the following findings that give us some concern:
"The liver is coarsened in echotexture without distinct malignant mass.
Mild hepatomegaly. The extrahepatic bile duct measures 5.7 mm, which is considered dilated for age."
We did not have these findings on the ultrasound last year after first being diagnosed, which showed: “The liver is mildly enlarged. There is normal echotexture without biliary dilation or distinct malignant mass. The common hepatic duct measures 2 mm.”
Please let me know if you can share any of your thoughts or experience on these types of findings, as I am concerned (suddenly) that his PSC is in an advanced stage.
As a follow up, the original MRI was done back in July 2020 before my son was diagnosed with PSC. We heard back from our liver specialist that he may want to obtain an MRCP for my son “to get a better look at the ducts”, which suggests that the MRCP is a more thorough analysis of the bile ducts than the regular MRI. I went back to see if we have an MRCP last year, which he did. The last MRCP on August 2020, after my son’s diagnosis of PSC based on a biopsy indicated: “Biliary system: There is dilation of the common hepatic duct measured at approximately 6 mm.”
So perhaps this MRI finding from today of his bile duct being dilated at 5.7 mm is actually less than, or in the same range, as the bile duct dilation back in August 2020.
Very confused by the results of all of these tests and what they mean, but all of this may suggest that his PSC has not progressed? Trying to be hopeful.
I wouldn’t worry too much about the abdomen scan. Typically, I would look at a combination of tests results, ie MRCP+Elastography+Bloods+Colonoscopy+Clinical symptoms.
If the combination of these test results shows an overall improvement , it means that the treatment works . My daughter (PSC+UC, diagnosed in 2013) has been on Vanco (500mg, twice per day) for 7 years now. The bloods normalised after the first 2 months on Vanco and they have been normal since then. Her clinical symptoms (UC, abdominal pain, itchiness,fatigue) dissappeared in the first few months on Vanco as well. However, the Fibroscan and MRCP only showed normal results after 4 years on Vanco. Her colon has also healed.
DB1, I really appreciate your thoughts. I will be reaching out to you separately as well because I want to avoid having my son ever going off Vanco given the great results he has had (his physician has hinted about reducing or eliminating his Vanco at some point). I am working to collect experiences of others in this situation with children on Vanco. It sounds like you have gotten great long-term results.
He is also doing wonderful physically, having grown substantially over last year, nearly catching up with his twin brother. He also is very active in sports. Thanks so much!