Has anyone had a child with acute liver failure ?

[petunia13]

[Victoria2]

petunia, could you give some more details, how old is your child and what type of cirrhosis does he/she have. Is your child on the transplant list, I would assume he/she is. I hope they find a liver really soon. Do they have ascities or problems with bleeding varices? I was born with a liver disease but have had ascites and know a lot about liver disease. Do they have itching. I would like to help in some way but don't quite know what to say.

[flapper]

Good morning Petunia, this post certainly woke me up! My little girl suffered from acute liver failure at 22 months of age and there isn't that much to tell. She was an extremely healthy baby, i don't even have any colds to report.

One day I noticed a slight yellow tinge in the inside corner of her eyes, we went straight to an emergency doctor appointment from there straight to our local hospital, then transferred to LGI. Doctors would tell me every day of the new illness they were testing for and the results would come back negative, her liver continued to deteriorate, until day 10 when she began showing signs of encephalopathy and was admitted to PICU. She had her liver transplant on day 13. The cause of her liver failure is unknown.

She's now 17 months post transplant and apart from the usual hiccups, she's doing well.

Im really interested to know your story.

[Clarkies in reply to flapper]

Just read your post and it is like reading something I had written, exactly the same by my son was 18months old and had his transplant on day 10!

[petunia13]

Thanks so much to both of you for your replies I should have put a bit more detail in my question in the first place. My child had acute liver failure at 7 years old, and was lucky enough to have a transplant. He is now 13 years old and is fine at the moment. I really posted the question to help others, as it is a rare condition, I wanted to see who else had experienced it. It's so scary, as it happens so quicky, and I just wondered it I could help anyone Flapper, our situation is very similar to yours, and our child had his transplant on Friday 13th April 2007 (13 is now our lucky number). This was 11 days after I noticed his eyes were a bit yellow ! He has an auxiliary transplant, so he had some of his own liver left in to try and regenerate . If you want any more detail, just let me know. Thanks again

[Victoria2 in reply to petunia13]

Hi Petunia, well I'm really pleased your son is well now and had his transplant etc. Did his liver regenerate? What is an auxiliary transplant --I keep thinking down the years I have learnt most things and than something new comes up! I ask only because it may help someone as you say.

I imagine it would be very fightening, thank goodness for liver transplants. I met a young woman of 21 years of age at Kings College Hospital and her liver just failed out of the blue, she didn't have one day of illness which in an odd way seems lucky compared with other people I have meet but its the liver transplant that makes the difference. She seemed to have taken it in her stride but I bet her parents were frantic.

i'm glad your son is well, I meet one lady hwo had her transplant 16 years ago and she was very well all that time, th eonly reason she was in hospital was due to a skin rash and they were checking to make sure the liver wasn't rejecting. I hope your son stays well.

[Biag]

Hi everyone. I am glad everyone's children are well. This post woke me up too!! Our 6 year old son had acute liver failure when he was 26 months old. Totally out of the blue. He became ill in April 2009 the same day our 2nd son was born - we obviously remember that day very well...! The first signs were jaundice in the whites of his eyes, which quickly spread all other his body. He was admitted to Chester hospital the same day, and stayed there on medication and lots of blood tests to identify the problem. At this stage the doctors thought he had a weird contagious disease so they kept him in isolation, meaning me (dad) and poorly son couldn't see new baby brother, and poor mum, now in maternity ward couldnt be/see him, even though we were all in the same building!! A week later he was transferred to Birmingham Children's Hospital were he underwent more tests. A further week later it was obvious he quickly needed a liver transplant as he was developing encatholopothy. He went on top of the super urgent transplant list, and shortly after he had to be admitted to ITU. 24 hours later they found a suitable donor and on May 3rd 2009, 17 days after he first developed symptons he had a full liver transplant. 16 days after his transplant he was discharged. He is now well and a happy lively child leading an almost normal life. He recently spent a week in hospital with chicken pox but other than that he has been very well, apart from the normal coughs and colds kids get. I must say the staff at Birmingham and Chester have been wonderful and our care he received during and after the event was excellent. We would be happy to share more with people and to speak to anyone anytime. I believe acute liver failure is so rare (5-6 cases per year in children) so it would be good to stay in touch and share stories how are kids progress etc. Take care all.

[flapper]

I obviously don't want anyones child to be ill, but i'm really excited to hear your stories!

We too have had fabulous care, both from our local hospital and LGI. We have made fabulous friends either from being in hospital or during the summer, my daughter took part in the British Transplant Games which was a brilliant way to meet other parents and for my daughter to make new friends in the same situation. Everyone we have spoke with has had chronic liver disease, I have learned a lot about kasai and ascities and all these other terms I didnt even know existed, but we didn't have any of that. One day she was fine, running around with her friend who we had to stay for the day, the next day her eyes started yellowing and our lives turned upside down onto this new path.

An extremely intense and shocking time, a lot of information to take in, very frightening. Something im still getting used to.

Hearing of children who are 3, 4, 5, 10 etc etc years post transplant, gives me a huge hope for the future.

Thank you for this post and your replies, you've made my day.

[petunia13]

I'm so glad we all are able to share our information on this subject. An auxiliary transplant is where they leave a bit of the native liver in, and also have a transplanted liver. The hope is that one day, the native liver will regenerate, and the donated one will not be needed ( and I think is left to shrivel up - which is hard to understand and accept, as the thought of ruining something that has saved your sons life if hard to accept). The stage we are at is this......Kings College Hospital, started to reduce my sons immunosupression in August 2010 (transplant was April 2007), and he was off it altogether by September 2011. He has been completely medicine-free since that time. His liver is regenerating, but very slowly (someone suggested that he has tolerance to the donated liver, and so likes it too much to let it go ). We go to Kings again shortly for Outpatience, and so may get some update then, but will probably take a CT scan to get a full update (this is when they can get a really accurate idea of the size of both livers). He has attended the Transplant games 5 times, and when there, we are on the lookout for people to talk to about acute liver failure, but its not easy to find people. Thats why this site is so good. Please keep in touch if you have any questions or concerns. Thanks

[flapper]

What a fabulous sentence to be able to write! 'he has been completely medicine-free'!! Ive heard of an auxiliary transplant being referred to as a piggy back transplant. The whole science of the transplant world amazes me. There is a lot of information to take in, ive learned a lot about livers and transplants since we started on this journey and still struggle to get my head around it.

We'd love to say hello to you at the games, we're getting very excited for it!

[petunia13]

Hi there ! We are not going to the Transplant Games this year. I'm gutted, as the very year we don't go, we have the chance to meet up with you, Flapper ! Maybe another time ! Maybe there will be another occasion in the year where we can meet up ? Let;'s hope so

[jdiv]

My daughter fell ill on her birthday and became ill with flu so I thought. She started getting jaundice and that's when we were sent from local hospital to kings PICU. She was unconscious and we were told that she required a transplant. This was a lot to take in less than 24hrs from having a healthy 12yrs old to one in PICU. Luckily she received her liver transplant, but I remember the doctor telling me that she maybe having and auxiliary liver but that was not to be due to her condition. I'm so glad it has worked out for your son and wish both of you the very best.

[Danzidan]

My son who is 3 has had 5 acute liver failures since October 2011 his regenerates every time but this still happens all the time! He's been on the super urgent list 3 times but never actually came to transplant close twice one was not splittable at time of operation and the other got refused as was not good enuf and he got better! They think his is some kind of metabolic disorder but everything is coming bk superb!! So since his last one was really bad helped by catching chicken pox, he's on overnight feeds to bulk him up as he's very little and going to be listed at next clinic I think! Very scared x

[dinesh001]

a 10 year old girl in my neighbour is suffering from serious liver disease and need transplant but doctors are saying their is only 10% chance of survival any suggestions

[Pizamkazdw]

Hello, I have seen your post this year and I realised I am a bit late I had an auxiliary transplant this year and was wondering whether there is still someone 'active' who I could talk to about it? As you said Petunia13, it is a rare procedure so I haven't met anyone who could exchange experiences with me but I stay hopeful. Many thanks for your help in advance!

[petunia13 in reply to Pizamkazdw]

Hi there. Thank you for your message. It is actually my son who had an auxiliary transplant back in 2007. At the moment , he still appears well. If there is any particular thing you wish to ask, please send another message and I will pass it onto my son. Hope you are well and doing fine ?

[Pizamkazdw in reply to petunia13]

Hi, thank you so much for getting back to me I am not able to message you privately on here, I don't know why. Would you be able to message me? Or maybe emails? Many thanks for help!

[LittlestWarrior]

My daughter was born with a rare liver disease called Biliary Artesia

She suffered a long year and a half before getting her transplant about a year ago ♡