IBD and Autoimmune Hepatitis? (3 y/o)

[RexMom]

My son was dx with IBD last June. Hs liver enzymes have been up and down and further testing last Monday leads the GI to think it is autoimmune hepatitis. (I don't know the specifics of all the labs done but I know smooth muscle was one of them). I am going in on Tuesday to see a hepatologist and my GI dr will also be present. I'm just wondering if anyone has dealt with this and can offer any advice or suggestions as to what I should be asking. I saw that a biopsy is needed to confirm so I am prepared to hear that.

 

[my little penguin]

There was two moms with kids in the parents of Ibd kids section
Tagging girl with a curl mom

 

[ronroush7]

I don't know if it is the same but I was told last year that I was susceptible for hepatitis b. I had to get three shots. The first two were within a month of each other and the last one was six months after the last one.

 

[GirlwiththeCurl]

Hi! My daughter who is six is diagnosed with IBD (probably UC), autoimmune hepatitis, and primary sclerosing cholangitis (a slow-progressing disease of the bile ducts).

I'm not sure I have any great wisdom to offer. I believe the usual course of treatment (and the one my daughter is on) is a burst of prednisone to induce remission of the AIH and then introducing azathioprine--an immunosuppressant--to maintain remission. Azathioprine can sometimes cause liver damage, however, so you can expect bloodwork every week or every other week for the first few months to make sure that your son's liver enzymes are normalizing. I don't know what the second choice of treatment is if azathioprine doesn't work, though.

Everything has been going smoothly for my daughter, so I don't have a lot of "what if" info right now. I'm sorry your son is going through this, but I hope he gets a clear diagnosis right away. Better diagnosed early than undiscovered until there is significant liver damage. Good luck!

If you have any other specific questions I will answer anything I can.

 

[crohnsinct]

My mom has AIH. It is a tough one. She went on prednisone and then moved to azathioprine and has been doing very well.

I don't know a lot of the ins and outs of the disease but may I suggest a book, Curing Courtney.

It is a holistic approach to AIH so maybe not for all but I met this woman and she is pretty amazing. She worked with MD's to find the right treatment and I have met some of the families and children who she has helped with her free advice and support etc. Some of the families used the holistic approach in addition to meds and were able to cure their kids.

Good luck!

 

[RexMom]

Just wanted to follow up on this post incase there is anyone looking for similar information. My son does have PSC and possibly AIH. He has been on prednisone which may be treating the AIH so as we wean the pred, we will know a little more. The scope and MRI looked good except for small duct PSC.

 

[GirlwiththeCurl]

I am so sorry to hear that your son has PSC (and maybe AIH).

I don't know how much you have looked into online support, but there is a moderately active forum at livingwithpsc.org, and a really good Facebook group called PSC partners seeking a cure (there are both an open and closed group). The Facebook group especially is a great resource.

I have not found a support group specifically for AIH.

I hope things go well for your son and your family.