RALFS: So we have waited so long for a... - Children's Liver ...

Children's Liver Disease Foundation

2,003 members703 posts

RALFS

Danzidan profile image
3 Replies

So we have waited so long for a diagnoses and nows the time we have it for my 4 year old son, It's called recurrent acute liver failure short, there's only 12 of them in the world and I wondered if any of you are on here! Long shot I know! X

Written by
Danzidan profile image
Danzidan
To view profiles and participate in discussions please or .
3 Replies
McSousa profile image
McSousa

Hello. Sorry to hear about your poorly boy. I have no experience of this particular liver disease but am sure that I have read about someone with a similar thing on the "Liver Mums" (which also accepts dads) Facebook page. I'll ask there and will be in touch, unless you decide to join that group too. Hope you're doing ok. Keep in touch. x

Danzidan profile image
Danzidan in reply to McSousa

I'm on there it's prob from me that uv read it I popped it on today!

McSousa profile image
McSousa in reply to Danzidan

It was before today- weeks ago..... Hmmm!

You may also like...

High direct bilirubin?

Our little man is 2 weeks and 5 days old. At 3 days old he was put in the nicu with a high indirect...

Long term after Kasai operation

My son had his Kasai when he was at 14 weeks old . His is going well and now he is two years old and

1 week post kasai, baby crying a lot

I'm new here. 1 week ago my 11 week old son had the kasai done for BA. He was doing perfectly for a...

7 year old boy diagnosed with Liver Disease

I'm devastated. Today I was told my 7 year old son has Liver disease. Despite a few issues he seems...

Does elevated conjugated bilirubin in newborn always mean liver disease?

I have a 5 week old baby girl who has been jaundiced since birth (can especially tell in whites of...