Hello pls any one tell me recent stories bcoz im very nervous about my son
Billiry attresia : Hello pls any one... - Children's Liver ...
Billiry attresia
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srajeshwari53
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hi. My daughter had it 17 years ago. Only noticed at 14 weeks old, which meant the Kasai operation was very touch and go. 6 weeks in hospital thinking she would need a new liver. She then recovered remarkably. Now about to turn 18 years old and healthy. Hope I can help if needed
Can I ask, does your daughter have regular check ups? is there anything she can’t do? My son is only 7 months old now but I always think about his future.
A natural worry! Every case is different.
We had regular check ups every 6 months until she was abou 13. Then it became once a year. Our daughter was not restricted by her cirrhosis during her school days. There were a few headaches and infections in the first couple of years. Does your hospital have a support network for parents with kids with biliary atresia?
My Hospital is brilliant, they know exactly who is and when we’ve been in when worried they do all the right things. There isn’t a support network though.
Is your daughter allowed alcohol? Are they restricted with this kind of thing? I do wonder what he will be like as a teenager 😂.
She shouldn’t drink alcohol, due to a damaged liver. Like most teenagers she has had a couple of blowouts creating stress all round. We have had to recover from hospital after one episode. Blood test revealed little harm. Most teenagers don’t drink anything like the way we did as teenagers ( I mean me!).
All you can do is emphasise the harm alcohol does in general, and specifically to those with a weak liver. General parental advice. The childhood liver disease foundation is a good source of support and advice on all of this.
Hope that helps, but do come back to me if necessary
That’s what I’m worried about. I remember myself as a teenager! I agree non alcoholic drinks are all the rage at the moment!
Thanks for getting back to me.
My Son is 9 weeks old, had the kasai operation when he was 6 weeks old his eyes are still a bit yellowishStool is light yellow and he poop every feed
doctors said that they found mild to moderate fibrosis in his biopsy report . i wanted to know about mild to moderate fibrosis . anyone had this kind of report?
Also poop colour? When it change
The colour changes with the more food and vitamins they get. Doctors will advise on this, it can be a long time, but the colour change to normal is very important as a marker on where they are with their recovery. I know nothing about fibrosis in my case.
I have checked with my wife, and we havent heard any reference to fibrosis before. Our daughter had mild cirrhosis after the operation biopsy, unsurprising due to the delay in treating her at 14 weeks. In our experience this mild cirrohosis has not had any significant harm to date
My Son is 7 months old, had the kasai operation when he was 9 weeks old. He is doing really well. There is a light at the end. Try and be positive and stick together as a family.
My Son is 9 weeks old, had the kasai operation when he was 6 weeks old his eyes are still a bit yellowishStool is light yellow and he poop every feed
doctors said that they found mild to moderate fibrosis in his biopsy report . i wanted to know about mild to moderate fibrosis . anyone had this kind of report?
Also poop colour? When it change
It’s uncertain at first as not much changes and then all of a sudden things start to change. Slowly but surly! We almost saw a change over night when he was about 4 months old, but until then he was still jaundice and his poos were always playing tricks with us. Every child will have an uncertainty ours is his enlarged spleen. But over all I’m sure your son will do very well.
Thank u for ur response and how is ur son now? and did he gain weight and how is recovery
My son is 7 months old he weighs nearly 19 pounds and is doing very well. He has swimming lessons, he’s rolling and he’s saying Mumma. He is just like any other baby.
He’s had a common cold which hit him quite hard and took him to hospital but he recovered well.
The first few months after the kasai is hard, wondering and waiting. Even the first pre op appointment I wasn’t sure if things were great he was still jaundice and his blood results were not really coming down.
Then all of a sudden things start changing quickly. I now even forget there is anything wrong and I don’t even tell people anymore.
You will get there and there is hope. I promise!
Thank u for ur huge response and u give me a confidence and sure ur son will be normal and healthy thank u i pray for ur son
Woww. Such a relief. Is there any medicines taking still?
We have his 6 month post op appointment next week. Medicines will be reviewed then. At the moment he still takes all his bite man’s and 2 liver medicines.
MichelleCLDFPartnerCLDF
Hi, it can feel very daunting and scary but there are lots of positive stories as above about Biliary Atresia babies. You will find more on our website blogs and news childliverdisease.org/categ... While there will be a range of liver conditions represented including BA they all show how children, young people and adults live with their condition/transplant and we are told can be very reassuring. Thanks.
Hello Thank u for ur huge ResponseWhen stool colour is change?
Which colour stool is normal?
Thank u
My daughter was diagnosed with BA as well and had her Kasai at 35 days. She is now 2 years old, with no jaundice. Had an episode of cholangitis just after few months of surgery. Is on medications and we visit every quarter for review with doctor. Few liver enzymes numbers go up and down but her bilirubin has been 0 and that’s reassuring. I have heard positive stories after Kasai and also I know someone whose daughter had a liver transplant at 6 months and she is doing well too. But it is a constant worry for sure but God will surely help and this phase shall pass too.
Thank u
