Autoimmune hepatitis in a baby - any info?

[DonCus]

Hi everyone, I'm new to all this, this is my first post!

My daughter was diagnosed with autoimmune hepatitis (liver biopsy 2 weeks before Christmas) she was 14 and a half months old, she's only 16 months now. She's on prednesol, Imuran (started 3 wks ago) She finally started to respond to treatment a few wks ago her LFTs are finally starting to go down - slowly - but they are headed in the right direction!

I'm told this is very rare in babies and I wondering if anyone here was diagnosed so young? I'd love to hear from someone in the same situation as us?

Thanks

Donna

[Julielothian]

Hi Donna.

I just received an email from jacquie at Cldf. She asked if I could speak with you as my son was diagnosed just after his first birthday with autoimmune liver disease. He will be turning four at the end of March. If you have any questions or would just like someone to talk to I will be happy to help where I can and listen always. Please don't hesitate.xx

[DonCus in reply to Julielothian]

Hi, thanks so much for ur reply!! I do understand that this affects everyone different but I'd just like to have a contact with someone who's baby was diagnosed very young aswell! I can't find anything online about babies. How is your son doing? What symptoms did he have initially? Does he take medication? Are his bloods normal now? How often does he have his blood checked? does having this affect him day to day? Sorry, Hope u don't mind all the questions? i probably have a hundred more!!

Thanks

Donna

[Julielothian in reply to DonCus]

Hey.

We were the same when he was diagnosed all I could find was it was rare and even rarer in boys and then rarer in boys so young. Freaked Me out. But I can tell u he is doing grt just now.

Up to the time of diagnoses I had him to the docs 5 times in 3 weeks. Kept telling me was a chest infection. Then his tummy git so swollen his inny became an outy. One doc said he had Buda baby tummy and sent me home. Adventually I'd had enough and demanded they refer him to peads. Always go with your instincts. Long story short from Monday to Wednesday I'd been in two hospitals then got flown to Birmingham sick kids as he was in acute liver failure. Was their for 3 weeks. Was a scary crazy time. When he first left hospital he had bloods 1 a week for about 6 months then every two weeks and so on as long as his bloods were good. was on vitamin k as his bloods did not clot, prednisone steroids and azathioprine. His bloods were all over the place to start but after adjusting his medication I can happily say they r almost always pretty perfect now. He does catch bugs easy and when he us I'll it last linger but now he is nearly four and only requires bloods every 3 to 6 months as long as all good. If you want me to go into greater detail about anything I will be happy to and to answer any qs you have if I can. Didn't want to hit you with to much all at once.

Regards

Julie.x

[DonCus in reply to Julielothian]

Thanks so much!in October Zara had MMR vaccine and the week following she was off form, very clingy n off food I thought it was because of the vaccine. She'd had a "pot" belly always but I noticed that it seemed more rounded then her inny became an outie so I brought her to Dr, i just knew something wasn't right. Dr sent us to paeds in our local a&e n it seemed to snowball from there. Some of her liver bloods were in the thousands. We've had a crazy few months. Consultant thought she had alagilles syndrome, (she has a narrow valve in her heart) liver failure and transplant were talked about! We were in shock! she was being tested for loads -all neg. Long long story short she had liver biopsy in Dec and this was diagnosed.

She's on prednesol, azathioprine, aquadec and losec. Finally only 3 wks ago her LFTs started coming down! Have ye had any setbacks? What about school? Can they ever stop meds? Hope u don't mind all the questions? Thanks so much

Donna

[Julielothian in reply to DonCus]

Hey.

So glad u had a quick acting Dr. Mason was put on the top of the transplant list over whole off grt Britain the day we arrived at Birmingham he was that bad. after being told for 3 weeks it was a simple chest infection.. I couldn't cope still at that point we had no diagnosis. Was scary all in 3 days. Mason bloods were also in the thousands. was so unreal at the time and you think the worst every day and that is not an easy thing to get over. but with each blood test and appointment and they show you results and you compare them. Over time it does get better and they get better. Mason started nursery after the summer and he is doing grt. He does get I'll more often than other kids and it takes him longer to recover.. Due to the Meds and condition he cannot have any live vaccines meaning the mmr so has not been immunised since his first jags I wld assume would be the same for Zara as she is also on azathioprine. I understand their is a lot to take in and not easy to put across in a message.

Also I have been told he will most likely be on his Meds for life as long as his bloods are stable. They say some can come off but usually never for more than cpl yrs then have to go back on.

If you would like I can give you my phn number and I would be happy to talk any time.

If you are happier by message then that's also not a problemx

Regards

Julie.x

[BethanyL]

Hi, my daughter was 16 months when hospitalized and AIH is the working diagnosis. She is two now and we still have many questions and struggles (NG tube, enzyme fluctuation, etc.). I hope your child is doing well.