Brain on Fire - NMDA testing

[trintiybella]

Dr. T. is doing the NMDA test for my child. It is blood work that he is doing, but in the book "Brain on Fire" they do this test through spinal fluid. Is doing it through blood accurate? or should a spinal tap be done for this. Can you enlighten me? Thanks

[PowPow]

There have been reports of negative blood and positive spinal tap.

There are lots of articles about NMDA online.

[Pandasphilly]

I agree with PowPow. We went right to spinal but it was negative.

[trintiybella]

Where did you have spinal tap done Pandasphilly? Did they find anything else while testing?

Edited July 22, 2013 by trintiybella

[PowPow]

Childrens hospital of philadelphia did our testing, though really any body can draw the spinal fluid and send it to mayo clinic for testing.

It seemed to me that CHOP does not believe in PANDAS, per se. Autoimmune encephalitis, yes. PANDAS without clear strep onset, no.

Trinity, can you remind me how old your daughter is?

[PowPow]

Childrens hospital of philadelphia did our testing, though really any body can draw the spinal fluid and send it to mayo clinic for testing.

It seemed to me that CHOP does not believe in PANDAS, per se. Autoimmune encephalitis, yes. PANDAS without clear strep onset, no.

Trinity, can you remind me how old your daughter is?

[Pandasphilly]

CHOP doesn't believe in pandas even WITH clear strep onset. Or at least they dont treat it if they do. Ours was ordered by dr. Latimer and done at Georgetown as that was my sons treating physician at the time. Typically with nmda there is seizure and memory loss During the illness but perhaps not in every case