Hi my son was diagnosed with autu immune liver disease at 3 years old and kept it under control with tblets but 2 years ago at the age of

[Dancing2]

17 was put on the liver transplant list its now 2 years on and we are still waiting for a liver to be available hes now 19 and at a critical stage im really worried and anxious please any advise welcome !

[Hidden]

Hi, my daughter too has AIH and was diagnosed aged 16. Her AIH is kept under control also by medication and so far so good. She was on the transplant list but as she responded so well she was taken off. I worry though that she may have a flare up. Two years does seem a long time to be waiting for a liver, although I am no expert. Have you considered been a live donor; at Leeds were my daugther is looked after, we had a meeting with the Live Donor Nurse, it may be worth a chat.

Keep strong.

[Dancing2 in reply to Hidden]

Thankyou so much for your reply . I now shall speak to the specialist caring for my son . so pleased your daughters doing well ! That makes me happy ! Hate to hear of a child or youngster suffering . I hope and pray they find a doner soon ! For us .

[Matt_Bates]

Hi. My daughter Alice was diagnosed with AIH last year at the age of 4.

Her levels are being managed by Pred. and Aza. but we are preparing oursleves for tough times ahead, and the likelyhood of a transplant.

We attended the CLDF Conference a few months back, and heard about lots of amazing developments, including stem cell transplants.

I read about a case last year where a young boy had stem cell transplants instead of a liver transplant - Here is a link to the article:

guardian.co.uk/uk/2011/nov/...

It may be worth asking about this too.

I wish you and your son all the very best. Take care, Matt

[Dancing2 in reply to Matt_Bates]

Thank you ! I shall be looking into this .

[Hidden]

Hi

I don't want to blow your fire out, but I did ask about stem cells for Elle (17) and they said that as this is very new it is highly unlikely that they would offer to an older child/person as they could not grow enough stem cells that would be needed.

Just bear this in mind when you ask.

Pam

[Dancing2 in reply to Hidden]

Oh okay I shall ask anyway any opportunity to get him well again is something to look into thanks ! For your input it means a lot .