Anyone had their child's ESR come back normal

[Christianmom]

My son, 16, just got his ESR test (inflammation) results and it was in the normal range, even low -- 3 mm/hr (0-15 is normal). I can't understand how there can be PANDAS when there is no inflammation. Yet my son isn't getting any better. Has anyone else seen this with their child? Does this mean IVIG or plasmapheresis would do no good? And why does my son regress when off antibiotics if there isn't inflammation? I would appreciate any thoughts anyone might have. (My son's CamK was 168 several months ago.)

[nicklemama]

I'm assuming the ESR is the erythrocyte sedimentation rate. My DS has never had one done. I wasn't aware it was used in PANDAS. I have had rheumatoid arthritis since 1997 and my sed rate has always been normal and I can assure you that I have inflammation going on.

[Christianmom]

I'm assuming the ESR is the erythrocyte sedimentation rate. My DS has never had one done. I wasn't aware it was used in PANDAS. I have had rheumatoid arthritis since 1997 and my sed rate has always been normal and I can assure you that I have inflammation going on.

 

It isn't ordered for PANDAS. My son's lyme doctor ordered it. But my understanding was that it was a general test for inflammation without showing any real cause. I was shocked that it came back normal, even low. But if yours and pandas16 were normal, I guess the test is pretty meaningless. Does anyone have any idea why it isn't measuring inflammation correctly? Seems odd that the doctor would order a meaningless test.

[Mary M]

My classic PANDAS dd had a neg ESR too. I have been told by PANDAS docs that the ESR can not discern the inflammation created in PANDAS.

Mary

from Michigan

[nicklemama]

ESR is standard testing for inflammatory diseases like lupus, RA and other rheumatory diseases. I'm sure its tested in other inflammatory diseases as well. However, its not specific enough to use diagnostically to say, yes, you have inflammation, no doubt. Many people w/ rheumatory diseases do have elevated ESR's. Its just one signal where many have to be present for diagnosis. With the fact that not everyone who has an inflammatory disease has an elevated ESR makes it only one small part of the diagnostic picture. There are other markers used like C Reactive protein that shows inflammation. I am on of those who's blood does not show any signs of inflammation, although its clearly there. I think its likely that the inflammation from PANDAS remains in the brain, rather than circulating throughout the body. One more thought, lyme causes arthritis like symptoms and maybe the ESR is elevated in many lyme patients. I just wanted to point out that a negative result does not exclude inflammation.

 

One other thought.....there are people who have elevated ESR's who have no known disease. Its just one small part of the big clinical picture.

[JJMom39]

My PANDAS ds had a normal ESR also.

 

He has always tested positive for ANA's though. For me, and two of his dr's, this is significant, but his ped doesn't really pay attention to it because she says there can be false positives. Just curious, has anyone else's child tested positive for ANA's (anti-nucleic antibodies--common in many autoimmune illnesses)?