Maddi’s Immunologist ran the Anti-NMDA antibody titers on Tuesday during our Rituximab infusion, and I got the results this morning! A reminder, at diagnosis, her titers were 1:5120; normal values are 1:10. Her doctors stated that this was the highest titer value they had ever seen, which led them to believe that she 1) had a teratoma or 2) had been sick for quite some time. (we recently ruled out the teratoma, so the other option is more likely.)
I am so happy to report, that as of September 13th, 2016, 4 months after diagnosis, 6 hospital stays, 5 rounds of IVIG, 3 Rounds of Rituximab, countless Steroid Pulses, Oral Steroids, 3 surgeries, 5 rounds of plasmapheresis, and lots of tears, her titers are now under 1:10!!!!! This means her plasma cells are not currently making new anti-NMDA antibodies.
She still has a long road of recovery to repair the damage of the encephalitis, managing her epilepsy, and healing her body, but I have a lot of faith that she will return to full functioning!!
The game plan is to continue Plasmapheresis for the time being, which will continue to remove any mutated plasma cells from her body. The steroids and the IVIG help suppress the plasma cells ability to make antibodies, so we will also continue those therapies as well. She will return in three months to get a maintenance dose of Rituximab, which works at the cellular level of destroying B cells, so they can’t create any new plasma cells, which in turn can’t mutate and create the Anti-NMDA Antibodies. Since we’ve ruled out a teratoma, we have no idea what caused Maddi’s immune system to go haywire, so going forward we will just have to be aggressive with her treatment and hope for complete healing. We are working on tapering her off the oral steroids to get a better idea of her immune system functioning, and in 3 months we will test her titers again. If her titers rise between now and December, her Immunologist will recommend a different chemo drug that targets the plasma cells specifically, since we can’t be sure how many mutated plasma cells are still floating around her body. I’m praying we won’t get to this point, but at least we have a good, solid plan.