Internal biliary diversion

[SGJ2013]

I was just wondering if anyone out there had undergone surgery for a partial biliary diversion and if so has it helped, my son is 3 and has pfic, he is on every medication and is on a trial med from the states for his itching. The trial drug does not seem to be making any improvement and the diversion is the next step before transplant. Thanks x

[Gemob]

Hey. My little girl is 4. She too has pfic. She had an internal biliary diversion done 2 years ago. This was a success for about 9 months then stopped working so it was revised into an external diversion. Best decision we ever made. She is literally like a different child. Still a little itchy on very hot weather but we can deal with that . If you have any questions feel free to message me. Good luck I hope you get the same success we have

[weetoatsy]

Hi there . My son has alagilles syndrome he has had biliary diversion for the itch . He had the Stoma first and it was great he was like a different boy without the itch . Unfortunately his track kept bleeding which is really unheard of so he got it internalised which failed now he has a button instead of the Stoma which has partially worked . He is also on the trial and on another 13 meds and goin closer to transplant now but my advice would b if you r offered the diversion with the Stoma it's def. worth a shot as transplant is the only other alt and its a huge undertaking . The Stoma and bags take a couple of weeks to get used to for both u and ur child but being itch free is amazing for them .

[SGJ2013 in reply to weetoatsy]

Thank you very much for your reply, it would be the internal diversion he would be getting. That's really the last resort before transplant as you said. I have been putting it off for quite some time as I was worried about putting him through the op if it didn't help, I am not getting to the point tho where it's not fair on him so if there's a small chance it could help I feel I need to try x thanks again x