Positive serum...Negative CSF

[MissionMama]

This may be a long shot but wondering if anyone has any insight on serum positive GAD antibody, but the CSF was clear? New neuroimmunologist said the titer (0.04) wasn't high enough to cause my son to be symptomatic, though she admitted there shouldn't be any measured at all...but he absolutely responds to IVIG (though the results never hold longer than a handful of weeks). We've been at this relapse well over a year now with using intermittent solumedrol (1-2grams) and HD IVIG every 5-7 weeks. Starting to see and hold more gains since December, but confused as to why this positive test for the GAD antibodies seem to mean nothing to this most recent doc.

 

I suppose my question is two-fold.... does a negative/clean CSF trump a positive serum result? And assuming is doesn't, can the serum result prove the disease is present and just in the earliest stages (or later stages meaning he is healing?) and will progress without treatment? I can make this theory work in my own mind since DS14 has, relative to other AE sufferers, milder symptoms of what this disease can carry. Main symptoms that stop him from living life (no school, friends, hobbies, etc) are anxiety, depression, OCD, rapid cycling moods, etc. We were hoping to have been able to uncover some science that would allow us to move to next line of treatment, but based on this doc she thinks he is just great...try more psych meds and therapy.

[jan251]

My child has anti-GAD65 antibodies. We have not tested CSF. My rough understanding is that these antibodies indicate an autoimmune process is going on and that there's inflammation. We did not see these prior to IVIg infusions. (Sometimes IVIg is helping the immune system work better and it may start producing measurable amounts of bad antibodies as it kicks into gear?)

 

Our immunologist is trying a slightly different protocol with our next infusion, using a different brand and including prednisone, to try to get the inflammation down. We tried solumedrol with our last infusion and it was not helpful. We have been infusing roughly every 3 weeks.

 

It sounds encouraging that you are seeing some gains. What is the rationale behind 5-7 weeks? That sounds in-between the 3-4 typically recommended by immunologists and the 8-12 typically recommended by non-immunologist PANDAS docs.

Edited February 28, 2017 by jan251