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
Dina
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Dina1986
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Hi there sorry no one responded to this post , my son who is almost 3 just had the same thing Billi same but elevated liver numbers - we have yet to figure anything else wrong .... were you able to get any further results with this . My sons team tested for infectious disease , celiac , and nothing so now they are saying “we think maybe those are just his new numbers ?”...we are awaiting a ultra sound to check in his liver but no real answers
Hi, sorry for a late answer, haven’t opened my account for almost a year and a half. We just sow doctors two days ago, the same thing , numbers are high and bili is a little higher as well, but they said they don’t expect them to go down, just have to monitor her closely, there is nothing they can do really, we will try to give her Urso again, maybe it will work better this time. It’s always frustrating 🤷🏻♀️
There was some little change in ultrasound but they couldn’t explain it, apparently it’s all they might expect in Alagilles, i spent all afternoon crying 😭 so sick of luck of information and feel so hopeless . Apart from that my daughter is fine , very active, happy, just as any other normal child of her age .
That’s wonderful she’s doing fine , for us , His numbers have never come down . ultra sound has shown no change . But at age 3 - they also do this other blood test ( checking cholesterol) and that came back high
Now waiting to be referred to a endocrinologist so they can help us manage that aspect , apparently some children with Alagille have this . With my son you would never know ... I am worried and waiting - frustrating
I hope you and your family are safe during this horrible pandemic.
Well, relatively fine I would say, you never know what to expect 🤷🏻♀️ liver numbers always have been an issue for us, change in ultrasound doesn’t sound good, but hopefully it won’t affect anything
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