Hi all. After some advice please, my little girl was diagnosed with pfic July 18th. Still waiting for genetics to find mutation and which variant of pfic she has. Her jaundice levels were crazy high, itching was unbearable and as many of you will know the lack of sleep/emotion/painful toilets etc were unbearable. She was put on rifampicin and urso along with vitamins to try stabilise her. Luckily they have and we’ve had the go ahead to take her off her meds but keep her on rifampicin. We’re really lucky as it came down as fast as it came up my main worry is now she’s off the meds what will happen? Is it usual for children to peak back up again? Or will we have some more normality? This is still totally new to me and her liver specialist isn’t local so I don’t have a lot to go on. Any help hugely appreciated x
2 year old daughter - new pfic diagno... - Children's Liver ...
2 year old daughter - new pfic diagnosis
![Bella270111 profile image](https://images.hu-production.be/avatars/67f6070de1ea42c5b1d5c28c2a106a09_small@2x_100x100.jpg)
Written by
![Bella270111 profile image](https://images.hu-production.be/avatars/67f6070de1ea42c5b1d5c28c2a106a09_small@2x_100x100.jpg)
Bella270111
To view profiles and participate in discussions please or .
Read more about...
1 Reply
•
![Lois-Cldf profile image](https://images.hu-production.be/avatars/3cf926719bb4422be16843023b0f28a4_small@2x_100x100.jpg)
Lois-CldfPartner
My name is Lois and I am the children and families officer at Children's Liver Disease Foundation. CLDF have lots of information for you on our website childliverdisease.org
You can also sign up with us if you live in the UK and you will get info packs and regular updates (all free) .. you can sign up here:
Not what you're looking for?
You may also like...
Kasai operation
Hi can some one help me my baby has kasai operation 9 weeks old and now its starting 2 nd week...
After Kasai
My baby had Kasai on may 11 2020.He has one episode of cholongites.now his blood values are going...
My baby was diagnosed with biliary atresia at 6 weeks got a Kasai at 7weeks, it has been such a scarey and emotional journey.
He is now 4 weeks post Kasai and doing really well feeding and gaining weight. I would love to hear...
Looking for positive outcome stories after Kasai procedure.
Hi, I'm simply looking for hope ... My son was diagnosed with BA at 51 days and got kasai at 53....
Stool color after kasai operation
When I know my daughter is improving after kasai procedure? She did the surgery 10 days ago. Stool...