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Daughter has Aih and he is 6

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Posted 3/13/2013 6:22 AM (GMT 0)
I am looking for anyone who has Aih or knows someone who has it my daughter is 7 and was diagnosed a yr ago when she was 6 we had liver biopsy done now they decreased the steroid and up the other med and now she having pians again and complaining of feeling nausea yesterday she threw up out of the blue.. I am looking for help info anything that anyone can tell me about this and LNG term what we are facing..thank you Shawna
Posted 3/13/2013 9:50 AM (GMT 0)
Hi Shawna

I have AIH and know of a few parents with kids with AIH but not many so my knowledge is more relevant to adults.

As you probably know autoimmune hepatitis is when your immune system wrongly identifies the liver as an invading germ and attacks it. The treatment is to suppress the immune system sufficiently to stop it attacking the liver but without getting too many infections. The initial treatment is steroids as they work to quickly damp the immune system down and also reduce the inflammation. Then immunosuppressants are introduced that work more slowly allowing the steroids to be reduced. If the first immunosuppressant tried (usually azathioprine) doesn't work then there are several alternatives.

The meds have side effects so a lot of the doc's work can be finding the right balance between side effects and keeping the disease under control. With a growing child I assume it adds another complication into the mix.Many people are fine long term on the meds - and indeed there is the possibility of the disease burning itself out. It is worth asking the hep if that is more or less likely with children - I honestly don't know.

If the disease is well controlled then there is every hope that liver damage will be limited and a normal life can be led - albeit probably with long term medication and regular hep appointments. That is how I would describe my current situation.

I think if your daughter is still feeling unwell it may be worth getting some blood tests done. It may be something totally different to the AIH but if it is a flare then the quicker it is caught the better. Similarly if it is the meds causing the problem the quicker it is dealt with the better. I assume she is under the care of a specialist paediatric hep.

Not sure where you live but it may be worth checking if there is a support group either locally or online for parents of kids with liver disease. I know there is a charity in UK but don't know about other countries.

Ask away with any other questions.

Ann
Posted 3/13/2013 8:14 PM (GMT 0)
Hello, Shawna, and welcome to the forum. I am sorry your daughter is sick with AIH. One of our moderators has AIH and may know a little about that disease in children. I will contact her for you. Meanwhile, you can do a search of AIH by going to the Search feature in blue at the above right. It will bring up all posts about AIH.

Hugs,
Connie
Posted 3/13/2013 8:53 PM (GMT 0)
And here is a link to the Cincinnati Children's Hospital web pages about AIH that may help

http://www.cincinnatichildrens.org/health/a/autoimmune-hepatitis/

Ann
Posted 3/14/2013 3:12 AM (GMT 0)
Hi Shawna,

I'm sorry to hear that your daughter has AIH.  I know of several children with the disease and most seem to be doing just fine.  It's all a matter of finding the right dosage and combination of medication.  What is the other medication your daughter is on?  I'm assuming it's one of the immunosuppressants but which one?  As Ann said, it is possible it's something other than the AIH that is upsetting her stomach.  Is she on any medication to protect her stomach from the prednisone?  It can damage the lining of the stomach and most who are on long term pred are also on a proton pump inhibitor such as prevacid or prilosec...

So they only increased the other med after they decreased her pred?  I can't argue with how my hepatologist treated me as I haven't had one problem with my treatment and he only increased my immunosuppressant just before my final pred wean once I was good and stable.  How are her blood levels?  Are her liver enzymes normal?  If she is on azathioprine and the doctor thinks the nausea is due to that med, there are other immunosuppressants she can be on that may be better tolerated....if that's what's causing the nausea.  I'd bring her to see the doctor if she is still ill in a couple of days.

Longterm life for an AIH patient is generally as good as it is for a "healthy" individual.  As long as we respond well to our meds and remain stable, we should expect a normal life expectancy.  Depending on flares and whether or not cirrhosis occurs, things can change but even when and AIHer has cirrhosis, as long as treatment is adjusted and tolerated, even transplantation is uncommon.

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