Caitlin Raymond: Managing Crigler–Najjar Syndrome Type 1 Crisis Without a Standard TPE Protocol
Caitlin Raymond, Assistant Professor of Pathology and Transfusion Medicine at the University of Wisconsin-Madison, shared a post on LinkedIn:
“Sometimes the evidence just isn’t there.
I recently consulted on a young adult with Crigler-Najjar syndrome type 1 in acute crisis — bilirubin over 30, altered mental status, concern for acute-on-chronic kernicterus.
The team needed TPE. I needed a protocol.
Except there isn’t one.
Every case report I found treats plasmapheresis as a footnote.
No volumes.
No replacement fluid recommendations.
No schedule.
Nothing standardized.
So I made decisions based on pathophysiology, first principles, and the closest analogous literature I could find.
I wrote it all up – the case, the evidence gaps, and the reasoning – in a new blog post.
This is my ask to the apheresis and transfusion medicine community: if you’ve done TPE for Crigler-Najjar, share your experience.
We need to start building the evidence base, even if it begins with a conversation on LinkedIn.”
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