3yo daughter cholestatic liver. Advice on soothing itching?
My daughter was born 1 month premature and stayed in the NICU for 11 days. We noticed elevated bilirubin levels, and since then we’ve been on a long journey of trying to diagnose.
Exome sequencing didn’t show any mutation.
Clinical test shows no symptoms of allagile (skeletal, eye, heart)
No autoimmune
She has an enlarged liver so a big belly
We monitor her monthly through blood tests and trimestrial ultrasound.
Despite no diagnosis or cirrhosis, doctors insist we need a transplant. I’m a match and in good health ever since i found out she’ll need my liver 2 years ago. I’m 32 now
We are really struggling with puritus. She itches a lot and scratches herself causing bleeding on her legs hands and belly. It was better before, now she wakes up at night from itching and scratches herself for up to an hour straight and it’s heartbreaking because i cant do anything to help her so i’m just helpless by her side.
She takes ursomed mainly everyday.
Doctors say she can’t have the transplant now because her liver is functional and stable despite very high enzyme results.
Bilirubin is very good and stable for over a year now
But GGT ALT AST alkaline are high in the hundreds
Any advice on helping with the itching? From someone living with a liver condition?
Please