Hi my little girl has PFIC and is having billary diversion for severe pruritus....... Has anyone's child had this? Experiences please :-)

[Gemob]

[weetoatsy]

My son Aarron has had biliary diversion 3 times he has Alagilles Syndrome and has severe pruritus too.He had the stoma first and it was amazing his quality of life improved dramatically and he coped pretty well with the bag. His track started bleeding so he ended up having it internalised which failed . So he now has a mik-key button in his gallbladder to which a drain is attatched overnight to drain the bile and it has been ok but he is still itchy. So we are now at the stage of waiting to go to Kings for transplant assessment. The way doctors have explained it to us is that its a mixture of surgery and meds and trying to get the balance right. Billiary diversion either works fantastic, is ok or just doesn't work at all. Im glad we tried it though as we saw what Aarrons quality of life should be like and I would say it is definitely worth doing as the relief from the itch if it works is just amazing.I know of a few other mums whos kids have the bag just now and are just on one or two meds and have just a little background itching and they do really well they go swimming etc so it is very encouraging. Hope this helps x

[Pfic1_mum]

Hi my son had a external biliary diversion done last year it really helped his itch and he was able to sleep all night, once we had the internal diversion his itch came back but was okay it's been 8 months post surgery and it's driving him mad I'm up all night with him

[Gemob in reply to Pfic1_mum]

Hey. Sofia had her internal diversion 18 months ago now. It was a success for 6 months then her itch returned. She now has an external biliary diversion and she is practically itch free. Can I ask why you went for internal when the external was working? X

[Pfic1_mum]

Hi. Our doctors thought the external would get in the way of his qaulity of life. We now going for liver transplant. Does your dough yet suffer any external bile burns?

[Stacian]

Hello Gemob

I understand this post is 4 yrs old and I hope this message gets to you, i was curious how your daughter is doing following her drain. My daughter is due to have an external billary drain next week and we are terrified

I lol forward to hearing from u

Stacey

[Stacian in reply to Stacian]

Apologies for the typo that should definatly not say lol, it should say look