A-E none hepatitis

[Scarlett22]

Hi, we are currently in Leeds liver unit with our 20 month old daughter, we have just been told she has acute liver failure, has anybody else been through This? Thanks

[Clarkies]

Our son was 18 months with acute liver failure, our hearts are with you and please let me know if we can give any advise x

[Scarlett22 in reply to Clarkies]

Thankyou clarkies, how is everything now?? Our daughters LNR levels have just stopped rising, completely still on pins, the worse rollercoaster of emotions EVER, hope your son is well now?

[Clarkies in reply to Scarlett22]

It is the worst roller coaster ever but always think positive. Our son is an amazing, happy, energetic 10 year old now - he has been through way more than any 10 year old should but it has made him the character he is.

Have they given you any ideas of what they are going to do?

[Scarlett22 in reply to Clarkies]

Brilliant news, kids are so strong its unreal, not sure what the plans are yet, still very much at the monitoring stage, keeping a eye on the blood sugars, clotting Levels ect. What happened with your boy??

[Hidden]

Hi Scarlett, I have a few families whose child has been diagnosed with acute liver failure and in some cases they never find the cause. I am visiting the ward at Leeds on Monday and will come and say hello and let you know how CLDF can support families.

I look forward to meeting you

Best wishes and take care

Jacquie - Families Officer CLDF

[LouiseJacques]

Hi Scarlett, how are things? My daughter had acute liver failure last November when she was 15months. It was the same non A-E hepatitis.. she was at Leeds too.

I'm here if you need to chat. I wish we'd had someone to talk to when we were in hospital. X

[Scarlett22 in reply to LouiseJacques]

Hi louisejacques, things have actually made a u turn and she is starting to improve, we have been allowed to come back to alder hey to be monitored, her INR are at 1.9 (after getting to above 4.0) so that Good, but haemoglobin and platelets are starting to drop so stil need monitoring. How did it go with your daughter?? X

[LouiseJacques]

Oh that's great news Scarlett! Happy to hear that. I hope she keeps improving. Unfortunately we weren't so lucky and our daughter ended up with liver failure and had to into intensive care and she was on the urgent list for the whole country for a liver transplant. Luckily we got one after 5 days and she's now back home with us and doing well.

I honestly can't believe what she's been through. The consultant said our case was extremely rare as she went from being fit and well to complete liver failure in a week 😕

Such a relief knowing you're not having to go through what we did. Xx