My little girl had her Kasai at 4.3 weeks and now she is 4 months post kasai. She is gaining weight and is very active. Two scans revealed her liver seems to be normal. Clinically she is doing well but her stool colour is still not convincing, Bilirubin stayed the same level and her eyes are still yellow. Her stools have some green jelly bits but not yellow enough overall. Had one episode of suspected Cholongitis two months ago.
Now that I see no signs of Jaundice going down,should I be worried and start to believe that Kasai did not work? Would love to hear your experience and thought. thank you.
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YBiliaryAtrecia
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Hello, this must be a very anxious time for you. My advice would be to contact your consultant, if you are not due an appointment you can asked to be seen early if you are concerned about your little girl. CLDF have a leaflet on Biliary Atresia which I will give you a link to. you can also get information from our website. childliverdisease.org
My daughter is in the same boat as yours at 3 months post Kasai. Your description matches our reality perfectly. I know our GI specialist has reassured us that as long as she's gaining weight and her lab work isn't getting worse they are happy. Obviously this does not provide much reassurance for me, as I'm sure you feel the same. I know from my research and conversations with her specialists is that we are likely in the middle outcome, where some bile flow is established, but not fully established to clear the jaundice completely. Our specialist is quite confident that this is the case for our daughter. He has reassured us that the jaundice does not harm her in any way, so long as she continues to do well with no other symptoms. He feels that if this trend continues she could live many years before needing transplant. He has experience with other children who were school aged and even older before their transplant, who had similar presentations after Kasai.
Your specialists may have a different opinion, as I have talked to other BA moms who were told it could take up to 6 months for the liver to "normalize" post Kasai.
Best of luck, i'd be happy to converse further if you find it helpful.
Sorry about the late reply. My little one unfortunately had to go down the LT route. It's been 9 months past and she is gaining weight and nutrition as normal. I hope she will continue to do that and will lead a normal life.
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