father of a 5 year old boy here. Last summer, my son was diagnosed with wilson’s disease after liver biopsy and high urine copper. LFT didn’t improve even after 6+ months of treatment and recently we have started to notice abdomen distention at the end of the day. MRCP revealed biliary dilation and colonoscopy scheduled next week, calprotectin came back high (290) few weeks ago. Diagnosis from doctors is AutoImmune Sclerosing Cholangitis (ASC) because of the aih component. Started treatment with Aza & UCDA and continuing treatment for wilson’s disease. We have been referred to immunology as well to look into immune response in general and some tests are ongoing, potential referral to genetic testing. We have started vsl#3, yakult, fish oil supplements for now along with fruit smoothies. Despite of the diagnosis above, he has no symptoms like fever, reduced energy, itching, diarrhea, abdomen pain. We are somewhat devastated as our 5 year old is diagnosed with 4 rare diseases within a year from being a healthy and energetic kid.
We tried to reach out to Dr.Cox using various ways but unsuccessful. Had a brief chat with Dr.Yinka Davis and looking to schedule an appointment with her in couple of weeks because of logistics. We are going to see if vanco works for my son and if it substitutes only ucda or aza as well.
We have learnt so much in last couple of weeks about PSC from this website and thanks for everyone who shared their experience and knowledge here. Really appreciate it.
I am going to show MRCP results below if someone can spot anything or compare with their reports.
Diffusely irregular and enlarged with contour nodularity. There is mild diffuse smooth intrahepatic biliary dilation up to 3 mm and moderate extrahepatic biliary dilation up to 8 mm. No suspicious hepatic masses. No filling defect in distal CBD. 1. Increased diffuse biliary dilation. Etiology unknown. No stone identified. No beaded morphology to suggest PSC. 2. Unchanged nonspecific diffuse liver disease. No mass. 3. New mild splenomegaly.
Any feedback appreciated.