My son has cholestatic liver disease and we need information and help asap

[Jesssesmom]

What we know- after surgery my sons liver enzymes went up to over 1,000. Hitas scan shows that his liver is not releasng bile. He did have many symptoms of liver disease prior to surgery but they were attributed to another condition (hereditary scherocytosis). The surgeon and gastroenterologists disagree on the cause/ treatment of the cholestatic liver disease. In the mean time, I am afraid my son may suffer liver damage. I think we need an expert on liver care to look at him.

After 18 hours and a dose of actigal the hitas scan showed the bile moved a little. The next day- lab work all stayed the same.
He is on phenobarbital, actigall, hydrocodeine, pennicillian, ketoralac. He is jaundiced, ithcy, very tired, having pain in the boney area above the liver (chest area). They sent him home from the hospital last night.
I am really scared and not sure what the next step in his care should be.  Please, can you offer some guidance. I don't feel like I can wait a long time for an appointment with a specialist. There are no hepatoligists in our state that I am aware of, but I can drive him anywhere I need to for help.

[Jesssesmom]

Thank you for answering. He is 10 years old. We live in West Virginia. They took out his gallbladder with his spleen.H.e had a HIDA scan and they could not see any obstructions.The surgeon did not think there were stones but that the anesthesia has made his liver stop slow down, the gastroenterologist seems to think there is some obstruction but is careful about what he is saying since he feels it is up to the surgeon. I'm very worried and don't know who to listen to.

[Thomas D Schiano, MD]

how old is your son and where do you live?  Spherocytosis is associated with gallstones--have they excluded any biliary obstruction?