2 year old daughter - new pfic diagnosis

[Bella270111]

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

[Lois-Cldf Partner]

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:

childliverdisease.org/cldf-...