Autoimmune Hepatitis Community Group
This group is for people who suffer from Autoimmune Hepatitis.
I do not have AIH, but my 3 year old son does. He was diagnosed at 1 year old! My whole world crashed down upon me because the only person I ever knew to have this died just after her 18th birthday and had struggled with the condition since the age of 5. I know that medicine and research have come a long way and that did help some, but the depression of this news was deep. Now that he's doing better and I'm feeling better I feel like I can talk about it all!
At about 4 months old he got diarrhea that just never went away! after 3 months of dealing with it I begged his pediatrician to look into it (she kept blowing it off) and she ordered test after test for weeks, but everything was normal. I finally talked her into sending us to see a GI doctor when he was 13-14 months old. This doctor listened to me right away. We tested him for everything and it all came back normal so he decided to do a Colonoscopy/endoscopy which was also normal, but his pre op labs showed elevated liver enzymes (that were previously normal) so we did more blood work and a liver biopsy. that is when we discovered the autoimmune hepatitis. this time the LKM-1 Antibody was positive (previously negative) and his LFT's had DOUBLED! The Doctor thinks that the LKM-1 was probably negative before because he was so young and he still had my antibodies in his system from pregnancy
We started him on Prednisone at high doses right away because there was already fibrosis of the liver and dead tissue. The Prednisone was slowly lowered (very slowly) over a period of about 6 months and then we introduced a medicine called Imuran (Azathioprine) and after a few months of taking both medicines together we weaned him off the Prednisone. He has not had Prednisone in about 8 months now and his liver enzymes stay perfect and it is so wonderful to have him off the steroids! boy was that hell!
He continued to have diarrhea during all of this though and started to have issues with vomiting. after more endoscopies and colonoscopies, swallow studies, x-rays, ultrasounds, and labs we discovered he had SIBO (small intestinal bacterial overgrowth) which is probably due to having a weakened immune system and treated that with a cocktail of antibiotics.
the diarrhea is still gone, but the vomiting has been coming on and off again lately and he has started getting sores INSIDE his mouth that bother him pretty bad. We are doing MORE tests now :/ The GI and the Hepatologist both think that his Autoimmune Hepatitis is likely just one part of a much bigger picture. It kills me to know that his body is attacking itself and that there is still something more happening to the poor little guy and all we can do is sit back and wait to discover what it is!
I'm told by all the Doctor's that he is doing fantastic and that there is a chance that this medication will work forever and he will be fine, but there is a chance that the medicine could stop working and he could end up needing a transplant, but they give me no idea what the chances of either actually are and when I ask they just say that there is no way to predict it. It's rare to have type 2 especailly at the age he was diagnosed and even more rare for a boy to have it. They also said there is a high probability that he will develop one or more additional Autoimmune conditions...but so far all we know of is that he has Psoriasis now.
what are your experiences with your medications failing? with taking Immuran? With developing secondary conditions? Are there any other parents out there who's children have this, or anyone who had this since childhood?
At about 4 months old he got diarrhea that just never went away! after 3 months of dealing with it I begged his pediatrician to look into it (she kept blowing it off) and she ordered test after test for weeks, but everything was normal. I finally talked her into sending us to see a GI doctor when he was 13-14 months old. This doctor listened to me right away. We tested him for everything and it all came back normal so he decided to do a Colonoscopy/endoscopy which was also normal, but his pre op labs showed elevated liver enzymes (that were previously normal) so we did more blood work and a liver biopsy. that is when we discovered the autoimmune hepatitis. this time the LKM-1 Antibody was positive (previously negative) and his LFT's had DOUBLED! The Doctor thinks that the LKM-1 was probably negative before because he was so young and he still had my antibodies in his system from pregnancy
We started him on Prednisone at high doses right away because there was already fibrosis of the liver and dead tissue. The Prednisone was slowly lowered (very slowly) over a period of about 6 months and then we introduced a medicine called Imuran (Azathioprine) and after a few months of taking both medicines together we weaned him off the Prednisone. He has not had Prednisone in about 8 months now and his liver enzymes stay perfect and it is so wonderful to have him off the steroids! boy was that hell!
He continued to have diarrhea during all of this though and started to have issues with vomiting. after more endoscopies and colonoscopies, swallow studies, x-rays, ultrasounds, and labs we discovered he had SIBO (small intestinal bacterial overgrowth) which is probably due to having a weakened immune system and treated that with a cocktail of antibiotics.
the diarrhea is still gone, but the vomiting has been coming on and off again lately and he has started getting sores INSIDE his mouth that bother him pretty bad. We are doing MORE tests now :/ The GI and the Hepatologist both think that his Autoimmune Hepatitis is likely just one part of a much bigger picture. It kills me to know that his body is attacking itself and that there is still something more happening to the poor little guy and all we can do is sit back and wait to discover what it is!
I'm told by all the Doctor's that he is doing fantastic and that there is a chance that this medication will work forever and he will be fine, but there is a chance that the medicine could stop working and he could end up needing a transplant, but they give me no idea what the chances of either actually are and when I ask they just say that there is no way to predict it. It's rare to have type 2 especailly at the age he was diagnosed and even more rare for a boy to have it. They also said there is a high probability that he will develop one or more additional Autoimmune conditions...but so far all we know of is that he has Psoriasis now.
what are your experiences with your medications failing? with taking Immuran? With developing secondary conditions? Are there any other parents out there who's children have this, or anyone who had this since childhood?
jane45610
Hello, I am SO SORRY to hear about your son. I was just diagnosed with AIH and have been seeking out support from those that are dealing with it. What a little fighter your son is. I cannot even begin to imagine everything you have gone through. I worry about my daughter (who is 2) developing this. Is there anything I should look out for? I hope someone responds to you soon.
Join the Conversation