PANS - help with ASO/IGE Labs

[KathrynE]

9 year old daughter is suspected to have PANS.  About 2 years ago she lost her ability to write and do math and started having anxiety.   We've since been on a path to determine why a healthy, A+ student all of a sudden develops a learning disability.  We're in the testing phase where we are trying to get to the bottom of the cause.  We are working with a Dr with no experience with PANS and we have a naturopath as well.  Recent blood work came back with her ASOT at 350 and her IGE at 2600, plus deficiency in vitamin d.    Her Dr. called me to tell me to put her on Vitamin D but said nothing about the high ASOT and IGE.  I only noticed it when I asked for the report.   I don't know much about ASO and IGE and whether I should be concerned  about those levels.  Should I be pushing for them to put her on antibiotics?  I have no recollection of my daughter ever having physical symptoms of strep, but I know that not all people have symptoms.       Any ideas?

[bobh]

You are right to say that not all have symptoms of strep, and PANDAS/PANS kids especially so.

A typical MD wouldn't prescribe abx on the basis of a single ASOT reading, even if it is high (as yours is).  It could be on the way down, so they would want to know that (with a second reading).  A swab is easier to do, and considered by most to be accurate.  But it isn't, because not all swabs are done well, and sometimes the strep can be elsewhere (perianal, or in the sinuses or other biofilm), and a throat swab won't catch those.

If it were my kid, I would be pushing for abx, but you are going to get resistance from typical (non-PANS) doctors per the above.