Hi,
I had gone through your question and understand your concerns.
There are not a lot of studies done about internal effect of congenital erosive
dermatosis, because it is a rare disorder of unknown etiology.
However let me give my opinion here.
I think you should get her examined deeply: immunogram, stool culture, stool analysis,
ultrasound of
liver, blood for IgG to CMV,HHV,EBV.
You should try immunomodulators, enzymes, probiotics,hepatoprotectors. Eventually, i strongly believe he will recovery. You also can try
plasmapheresis.
Wish your daughter speedy recovery.