New here

Hi Mom of AIH child,

Welcome to the forum.

You have come to the right place, we are a group of patients and loved ones of people with liver diseases.

One of our moderators has AIH and will be along to welcome you.

Our forum is very active and I hope the AIHers out there reach out to help you.

I can recommend tat there is a "Search" feature on the blue line above the forum where you can put a key word and pull up the posts about a specific topic...thus narrow down reading the posts where some of your questions can be answered. I'd put in AIH and autoimmue and maybe some of the meds to get some quick feed back from older posts.

There are some informational posts at the top of the forum with websites and definitions also.

I am a new Moderator here, having been an active particpant for 1.5 years. My partner has Hep C and HAD an HCC tumor on his liver and alcoholic cirrhosis. He had a transplant last year and is doing well. His trouble continues however, since the Hep C is a blood disease, he could be destroying his nice new liver right now!

I am sorry to hear about your daughter. Fortunately, the regime you report is pretty typical and may people get their AIH under control and live pretty normal lives. Even with transplantation, life can be good!!!! I know that for sure.

Best,
Mama Lama from Florida aka Carol

Hi DP,

Welcome to HealingWell.  I'm sorry to hear your daughter is ill.  Have they also run her antibodies to try to determine if it's AIH type 1, 2 or 3?  Since she's young, it's likely 2.  It's just something to know.  Sounds like they have her on the proper course for treatment.  Did they say why she's on an antibiotic?  Does she have any cirrhosis? 

I like to give the example of a lady I spoke to a few years ago when I was first diagnosed.  her daughter was diagnosed at 10.  The doctors told her she would need a transplant ASAP as she hardly had any viable cells left on her biopsy.  Mom requested they try medication first...so they did.  She is a happy and thriving 17 yr old now and never had a transplant.  Her liver is "bumpy" now and they believe that is how it is regenerating.

If her AIH stays under control, she should expect to live a perfectly normal life (with more than the usual annual doctor visit but that's all).

Hi Mom,

What a worry...and I know just what you mean. The kids can be so fussy about taking meds! When my son was young we had a terrible time!

Hopefully she will get used to it. The pharmacies now can add extra flavoring I think to many of the liquid meds....my grandchildren always want the banana. Which sounds awful to me.

Best,
Carol

Sorry to hear your daughter is ill.

I know several people (via another forum) whose kids have AIH and as Dany says they do seem to do OK - although the medication can take some getting used to. But like Dany I am aware of some who were nearly on the transplant list and yet 6 months later they seem to have bounced back albeit with scarred livers. Unlike other liver diseases if AIH is controlle dthen the damage should not worsen.

I am not sure where you are from but I was wondering if there were any charities that have a support line you could talk to? I am from UK and I know many people have found the Childrens Liver disease Foundation here very helpful. I am sure that there are similar organisations elsewhere.

Ann

DP, I'd ask her doctor at the next appt. (or call his office) about changing the liquid meds to pill form. Perhaps they prescribed the liquid form because the dosage is easier to regulate than a pill. She may require a smaller dosage than is found in pills. Just a thought.

Hugs,
Connie