Hi Nicole -
We know all about the liver stuff here, but I don't think it's common. I've heard 15-20% as well. Our daughter became jaundiced with enlarged liver at 2 months. We were also put on actigal twice a day. Her liver enzymes never returned to normal. We get ultrasounds every 6 months. We've also had two liver biopsies. Our last u/s was a couple weeks ago and showed she has early portal hypertension. Eventually she will require a liver transplant. Our doctor has told us he doesn't know how much time she has - it will depend on how her liver disease progresses. The biggest factor they will look at is growth. On the ultrasound they look for how the blood flows. Our daughter has enough constriction to make both her liver and spleen large. I think we're a more unusual case, though. I haven't heard of lots of other kids as young as ours with this much trouble. <img src="i/expressions/face-icon-small-sad.gif" border="0">
We know all about the liver stuff here, but I don't think it's common. I've heard 15-20% as well. Our daughter became jaundiced with enlarged liver at 2 months. We were also put on actigal twice a day. Her liver enzymes never returned to normal. We get ultrasounds every 6 months. We've also had two liver biopsies. Our last u/s was a couple weeks ago and showed she has early portal hypertension. Eventually she will require a liver transplant. Our doctor has told us he doesn't know how much time she has - it will depend on how her liver disease progresses. The biggest factor they will look at is growth. On the ultrasound they look for how the blood flows. Our daughter has enough constriction to make both her liver and spleen large. I think we're a more unusual case, though. I haven't heard of lots of other kids as young as ours with this much trouble. <img src="i/expressions/face-icon-small-sad.gif" border="0">