Hi my son was diagnosed with auto immune liver disease at 3 years old but kept it under control with tablets until he turned 17 we was put

[Dancing2]

On the transplant list but he's now 19 and at a critical stage 2 years on we are still waiting on a liver I'm so worried and anxious ! Any advice welcome please ! Thankyou

[lzphillipse]

My daughter has autoimmune to we have only met one boy who has it I believe it's very rare in boys. She is 19 now and 12 when diagnosed she is not on the list at the moment she to has been told medication as long as they can get away with it but she's having a rough time at the moment ! I understand how anxious you are as the whe disease is so hard to get your head around and there's no reasoning behind the symptoms and the timing of them. I hope his transplant comes very soon and you both get the outcome you want. Can I ask why the doctors made the decision to put him on the transplant list and have they got him on a drug called tacrolimus by any chance. Regards Liz .

[Dancing2 in reply to lzphillipse]

Hi thanks for your reply I do hope your daughter feels better soon this illness is so hard because from the outside the children look fine yet in the inside god only knows what they are going through i hope she has understanding friends to get her through yes my son is on Tacrolimus for 2 years now before it was azathioprine he was getting very tired soon and became jaundice which worried the doctors at hospital then we went through the liver assessment test and was told he should be on the list as he would need one soon as he kept becoming ill with colds and becoming very tired quite quickley that's why they decided to put him on the list and they was right because he deteriorated and is now very weak just hope we get called soon .

[lzphillipse]

Bless you I hope so to. Everything that happened to your son has happened to my daughter same medication but she has been on it since last June she's sleeping most of the day pain in her upper back , itchy and exhausted even after a shower I'm very worried but find I worry more than she does ! I really hope you get a donor soon it's heartbreaking to watch your child go through it . I wish I could take all of it away but the best you can do is be there I'm sure your doing a great job keep positive. Best wishes to you both Liz Phillips .

[Dancing2 in reply to lzphillipse]

I feel for you so much and fully understand what your going through nobody wants to see there children suffer it kills me and I feel helpless so I know exactly what your feeling .so glad I could talk to you about this as I have bottled it up for so long it's been really nice talking to you ! . It's so hard , I do hope your daughter keeps her strength up and keeps strong god bless her !

[lucieabbey]

Hi I was diagnosed wiv AIH at 21 just after having my daughter who is now 18mths old, I was in what they call end stage of liver failure and was put on the emergency list for a liver I had my transplant January 2012 , and now am takin immunosuppressent drugs so my body doest reject the liver, I have had 4 rejects in that year but got thru all of them, xx

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I cant really offer much advice but to say hang on in there, I hope that if it hasn't arrived already that a liver will arrive really soon for your son. Sending you positive thoughts and best wishes x

[Josh2512]

@Dancing, Liz - please be strong and be there for your children. My Son with diagnosed at 3 year (he is 6 and a half now) with Crohn's /Colitis and 6 months later with AIH/ASC. he is asymtomatic taking (prenisolone, Urso Acid, Methalezine). One of my fears is long term prognosis and how he will react during phases of his life, puberty, schooling, taking medication himself etc.. any advise or guidance would be appreciated. Kindest regards.

[mandymck in reply to Josh2512]

hi josh,,my son james was also diagnosed with colitis ,,AIH,and coeliac ,aswell as esophageal problems when he was 13 ,, he is now 16 and has come through puberty with flying colours ,, im 5ft 6,, his dad is 5ft 9, and james is now pushing 5ft 11and still growing, the doctors are amazed at how well he looks , he has 90% necrosis of the liver so he is not on the transplant list he has been at 90% necrosis since diagnosis , schooling was a bit of an issue because of the tiredness i would say he missed about 25% of school since diagnosis , but i need not have worried because he has just left school 2months ago with 11 G.C.S.E;s ,im extremley proud of him , in regards to self medicating ,i would say to help him as much and for as long as you can , and gradually over time give him more and more responsibility for taking it himself, children are forgetfull anyway ,i tend to get the medication ready and then leave it on the counter top where he can see it then its up to him ,, i still have to remind him sometimes though , i hope this helps a little , goodluck for the future , if you have any other questions i may be able to help with feel free to contact me ,,, best wishes ,,,,,mandy

[kyorgill]

Hi my daughter was diagnosed with Autoimmune liver disease in march after becoming itchy and jaundice and so tired. Kings have been amazing but I am so scared of the future because we don't know what to expect .Every time she is tired I worry that bloods are getting worse. I don't feel that people realise how ill they are as they look so well.