Hi, my 9 year old son has recently had a liver biopsy as his Consultant thinks he may have autoimmune liver disease.

[archiesmum]

I am so worried I just don't know what to do or what questions to ask, I would welcome any advice.

[Dellybell]

Hi it is a scary time that was me 18 months ago.

We were lucky as my son had virtually no scarring on his liver, he has since started on prednisone and a couple of other drugs and is doing reasonably well he is down to a minimum dose now and his bloods are now normal all within the space of 4 months. He has had a few side effects weight gain and acne which he is more bothered about but hey we are on top of the problem.

Worst part is waiting for diagnosis after that as soon as treatment starts it feels like at last someone is doing something.

Take care hope everything goes well with your son.

[mormer]

Hi, my daughter also was diagnosed with AIH aged 9, totally out of the blue, it was picked up incidently from a routine blood tests. We are now 2yrs+ later. My advice to you is to ensure that the Drs explain all possible side effects of the meds to you beforehand. If your son is to receive steroids I would advise you to ask the drs to give him calcium and vit d supplements as the steroids can affect his bones. I would also advise you to keep a check on your sons growth velocity as again the steroids can affect this. My daughter was also diagnosed with coeliac disease at the same time even though she showed no symptoms of this. Apparently this has a link with Aih so it might be a suggestion to see if the dr has checked his TTG levels in his blood. As Derrybell said, it really is a scary time for all of you, but this disease can be controlled with meds. Please feel free to contact me anytime if you need to ask me any questions. I really would like to help you, as when this all began for my daughter we felt so alone and scared too. Take care x

[archiesmum in reply to mormer]

Hello would you mind if I ask you some questions. Thank you

[mormer in reply to archiesmum]

Hi yes ask me anything. Send me private message and I will give you my email address if you wish x

[kdunlap74 in reply to mormer]

Good Morning! I just saw your post! Our daughter, Lauren, also has autoimmune hepatitis and ulcerative colitis. She was diagnosed 3 years ago. We live in Napa and have attempted to meet another child in the Bay Area that we could communicate with regarding this disease.

[mormer in reply to kdunlap74]

Hi, we are based in Liverpool, England. I hope your daughter is doing well.

[archiesmum]

Thank you so much for your replies and advice I really appreciate it. My very best wishes to you both and your children. Take care x