My 17 months old daughter was born with Alagille Syndrome, she was doing quite ok and showed positive dynamics and gastro team moved us from every 6 months check up to every year appointment. Her last liver scans were good and bloods were going down, still elevated but reasonably for Alagilles, her bilirubin were around 25 mmol . Last week we had some bloods done and results came back not something I expected, her liver numbers elevated but the bilirubin level still the same. We are going to do other blood test this Friday in order to see if they stay the same or going up again. I am worried we will end up at the hospital. She doesn’t look very bad and eats the same as before ( she never was great eater), growing and despite her petite size no one even can think she has liver disease. I am here to hear some positive stories from Alagille families, did anyone had elevation in liver numbers and then it came back to normal? Can it happen because we don’t give her urso anymore ? Would love to hear your stories.
Thank you very much