Kasai one week ago.

[BS6263]

We just had kasai one week ago, stools were yellow when leaving hospital now lighter and more pale. Drs. tell us to give it Time, but we are a wreck. Any time frame for bile or hope in general?

[vint]

Hi hun it took a week. Then pale stool on and off for 3 years. All is fine now at 14 years old and living with no medication! Have they checked there is no cholangitis if the stool is paler than before? If its clay coloured from being yellow and you haven't had bloods done then you need to seek medical help asap for bloods for suspected cholangitis. If you have never had dark green then yellow stool following kasai then its just waiting for the kasai to heal and hopefully work.

Hugs and hope X

[Bayu in reply to vint]

Hi can I know if you have noticed unexplained bruising on legs or back and also how has been weight gain of your child. My daughter is taking food normally but her weight gain is very slow is it normal ??

And also can I know when was the last you got LFT done?? When did you stop medication??

I'm asking the same question for you as well you know how it feels hope you understand

[M45984371]

Hi, a nervewracking time for you. Our daughter struggled up and down over the next 2 years, but is now 12 and fit and healthy. Ask your specialists as many questions as you want, because they can support you. It is a grim thing, but there can be, and is, a positive outcome. best wishes to you

[Bayu in reply to M45984371]

Hi can I know if you have noticed unexplained bruising on legs or back and also how has been weight gain of your child. My daughter is taking food normally but her weight gain is very slow is it normal ??

And also can I know when was the last you got LFT done?? When did you stop medication??

[M45984371 in reply to Bayu]

Hi

weight gain takes a llong time, as they tend not to absorb fat. The whole process of really worrying about developments, taking additional medicine went of for at least 2 years; additional Vitamin K went on for 5 years. It is a trying time and a real drain, however there is an upturn, and our 12 year old is fit and well, and you would never have known she was once so desperately ill.

[Bayu in reply to M45984371]

Thank you very very much for your reply it's a great relief to get answers. Prayers to all of you God Bless

[Bayu]

Hi hope your baby gets well soon, my prayers for your baby..i know how difficult it is, Just wait for few more days for the Kasai to work

My baby has had her Kasai when she was 55 days old

She is 19months old now I still check her stools every single day

She is still on medication and regular LFT are being done.

We will be getting endoscopy also done to check how her liver is functioning, I am hoping and praying for the best

[BS6263]

Any thoughts? Been 45 days still jaundice, stomach is bigger. Eating like crazy gaining weight. Stomach is huge. No ascites. GGT is normal! Billi still high. Need some hope.

[Molly__G]

My son is 8. His liver functions are not normal, never were. He has his liver, no transplant. His stomach was big for years as he got older his stomach started to go down. I was also concerned about the big stomach doctors were not. If the bloodwork is good and there are no fevers you should feel a little more at ease. It gets easier as he gets older. Just a little scary when it’s time for his follow ups. Hope this helps.

[Bayu in reply to Molly__G]

Hi can I know how old is your son, when was the last you got the blood test done. My girl ggt and ast is still little elevated,otherwise she is doing fine. But I am concerned how long will it take for the enzymes to come down.. It would be really great if you could share few details on this

[Molly__G in reply to Bayu]

My son is 8. We do bloodwork every 6 months. His enzymes have never been normal. They stay in the same range which means his liver has scar tissue that isn’t healing but haven’t gotten worse. His liver is maintaining with whatever damage he had prior to the kasai procedure. I have heard of some children who end up with normal labs after the procedure. My son wasn’t so fortunate. He is living a normal life other than having to have yearly follow up visits. We basically go to the doctor hear that he is pretty much in the same condition and continue to monitor. No one would know about his condition unless I tell them.

[Bayu in reply to Molly__G]

God bless your child.. Thank you for sharing also I would want to know regarding his diet, is there anything that you avoided or if you can list food which is good for the liver functioning, hope I'm not asking too much, I really hope you understand what we mothers feel like