Log in
Children's Liver Disease Foundation
1,347 members โ€ข 559 posts

Alagille syndrome

Alagille syndrome

My son is 11 months old he was diagnosed at 1 month. I'm not sure what all kind of tests he should have done. He doesn't have enough bile ducts in his liver. He stays itchy and doesn't sleep at night. He can't sit up on his own or crawl. I need advice I'm trying to figure this out on my own and it's not easy. I've been going from state to state to try and get him proper care. Any advice would be greatly appreciated.

2 Replies
oldest โ€ข newest

Hi Katie, I don't know if you are aware of Children's Liver Disease Foundation (CLDF) we offer advice and support to families who have a child with a liver condition.

you can find out more by going to childliverdisese.org

or if you wish to talk to someone please don't hesitate to get in contact on 0121021206028

Regards - Jacquie, CLDF Families Officer

Reply

Hi Katie, I have 5 month daughter with alagille, still waiting for genetical tests but the picture is pretty much she is having it . She is very petite, even when I was pregnant my doctor said baby was very petite but we didn't have idea that she could have this disease, I was completely broken and sad when we spent our first night at the hospital and all this biopsies and tests they performed on her made me feel really miserable, still hard but I am trying to cope with it, trying to think positive ...she also has some problems with balance due to her little weight, she is only 5 kg at 5 months, is your son also petite? Is he a good eater? My daughter is also itchy but Ursofalk seems to help a bit, but she still scratches her belly and inside ears, Nice to have someone to share experience. We live in little town and we are only one with alagille around here, my gp didn't even know what's that ๐Ÿ™ˆ๐Ÿ™ˆ๐Ÿ™ˆ

Reply

You may also like...