3 yr old has cholangitis

Hi, my 3yr old was diagnosed with autoimmune cholangitis (a rare disease of the bile ducts in the liver) two months ago. I am getting to the point now that I can start looking into some research and support groups to understand more about this. She is responding to her medication therapy... somewhat. She has been tapering off of predinisone from 30mg to 5mg this next monday (over a two month period).  She was not responding to predinsone alone so they added immuran and her ALT numbers went from 498 to 199 in one week!  Since then though we have not seen much change...in fact they went to 212 based on the last blood test. She has a pretty bad cold within the two weeks since the last test and they contributed the rise in numbers to that. Anyway I feel that we are receiving great care but I am the kind of person that wants to know as much as possible. I know that this is a rare disease and somewhat contraversial. So I would like to hear what others have to say and where to look for more info. I am worried long term about the side effects and I am wondering about what her life will be like with an autoimmune disease. Any comments on that are welcome too. I am so thankful for this method of communication. It helps me feel less isolated.

[Sir_Osis]

Good Morning,

I'm sure there are other that post and lurk here with similar conditions to what you list (or the caregiver/parents of said).

I would cut and paste your question over in the "liver transplant" section....not saying your child needs such a procedure - but the MD that moderates that chapter is bright, concise, and a good egg.  I think you'd likely get a great deal of info from him, as he sees many such matters.

Wandering ALT is common - and even when your in healing mode - the levels can blip up a few points - Of course the downward shifting trend is the desired outcome...

Cheers! - and give that Baby a big hug and a smile from me!!!

Jack