Hi, I am not sure if this will help you at all but I thought I should post anyways because I can relate to the situation you are in though mine is a little bit different. I have not been able to find anyone near by who is dealing with AIH especially near my age.
I am a 19 year old female and was recently diagnosed with Autoimmune Hepatitis Type II. My case started very similar to your sons. I had a case in the past of jaundice and it took me 8 months to fully come back to normal blood test results, though at the time we thought it was a gallbladder attack.
In November of 2015 I went to the emergency room because I was very tired, was starting to become jaundice was throwing up, etc. I was released with the flu and a ultrasound that showed "Fatty liver". Over the next week the doctors outside the hospital monitored my liver enzymes with blood tests every 2 days and on December 1 was admitted into the hospital with (INR of 2.7, AST 2464, ALT 3087, Bilirubin 421). I had every test as well done on me, in an attempt to find something that would come back positive to diagnose me was a transjugular biopsy, which came back positive for the Anti LKM-1 antibody (meaning I was type II AIH). The results showed over 60% of my liver dead and they brought in the transplant team because I was in acute liver failure. I was given 60 mg of prednisone once entering the hospital and was not given another dosage until 3 weeks later when I was tentatively released. I was on Vitamin K drips and NACs while in the hospital.
I am now at home with returning trips to a liver specialist who is trying to find the "Trigger" for my AIH. Plus frequent visits in and out of the hospital.
I have been on 35 mg of prednisone for 5 weeks, I have started tapering and I am now down to 30 with a 5 mg degrease every 2 weeks. Not going below 15 mg.
I am on 50 mg of Imuran, 1000mg Vitamin D, and Calcium. I have a 2 page list of side effects from the steroid which include drug induced type II diabetes ( on 2 insulins for that), kidney infections, internal bleeding, stomach ulcers, severe acne, skin/hair thinning, mood swings, nausea, headaches, adrenal glad deficiency (may or may not have to do with liver failure), my liver is now expanding and shrinking in a bad way which causes me a lot of pain.
Though I am only in the early stages of this tapering and condition my parents and I have done a lot of research and I have been seen by a lot of doctors. I know a good deal on the nutrition aspects, the condition itself, the drugs they have put me on, etc. Specifically tailoring it to liver failure and AIH. I have tried to understand this as much as possible even though it is such a hard thing to ever truly get a grasp on, and especially because I know it is really hard for my parents to watch me go through (though I have been told I am handling this well). I cannot fully relate to how your son is handling this, I mean when your in a position you could need a liver transplant, you will live with this forever and there is no guaranteeing it will never come back its not easy to cope. I am struggling with similar problems, I can't get a job because I don't know whats going to happen in the near or far future, I cannot go back to university this semester for the same reason, my friends treat me a bit different sometimes, but my friends and parents have been very supportive with doing things with me even if I do get tired easily.
It is a hard thing to be thrown into and defiantly a hard thing to cope with, as I have said many times to my parents you cannot take the irritation I get sometimes at the little things personally its just I went from being able to do all these things and now I cannot and I got handed this and now had to keep moving forward, at first all the unknown bothered me but patience is the key because this is one of those things that does not provide answers quickly.
I apologize for this being so long especially if it does not help you at all I just thought I would reach out for my own curiosity because as I said I have not found many if any people around me who have AIH and if I have they are nowhere near my age or close to what I went/am going through.
Post Edited (MH5899) : 1/23/2016 7:24:46 PM (GMT-7)