Hi, Just a quick question. Has anyone got a child with Alagille Syndrome and Kidney problems?

[lazz2]

[CROC]

Possibly. My daughter has AS and one of her kidneys is under review as it is smaller and less efficient than the other. The cause of this could be down to urinary tract infections before she was 1months, but all inconclusive - it could have been like that when she was born.

[lazz2 in reply to CROC]

Hi CROC, thanks for your reply. My daughter is nearly 2 and while her Kidney function is normal, we have been told they are 2 dysplastic kidneys that are small and will not support her in her teenage years. Things sound more positive with your daughter. Its hard when your just waiting to see what will happen but you have to stay really positive. U have any problems with growth. How is your little ones other organs. My girl is very small for her age. Maybe the size of a 1 years old. Considering having a feeding tube fitted.

[CROC in reply to lazz2]

Hi again. Sorry for delay - thought I'd responded but clearly hadn't pressed send. Sounds tough to be told prognosis on kidneys. Growth is getting better than previously but she is still more the size of a 3 yr old rather than the 5yr old that she is. She also suffered really badly with rickets due to Vit D and calcium deficiency and this impacted negatively on her height and posture. Vit D injections every 4 weeks have normalised her vit D and calcium levels and since calcium links to appetite, her appetite has improved hugely.

[lazz2]

Hi Croc,

Sorry, I meant to thank you for your reply. I'm pregnant and have been very sick with it so just getting back to normal now. My girl seems to be improving with the feeding so going to see how it goes. Saw a post on another site recently - a girl 29 with AS and she said she was always very small for her age but had a growth spurt in her teens. I think a lot of problems with AS rectify themselves with time. Good to talk to someone else with a child who has the same condition. Take care. M