PANDAS morphed into TS!!!

[evolveme]

Anybody else's kid start with a dx of PANDAS at a young age and now meets criteria for TS?
My son was dx with PANDAS at 2-3, after a months-long strep infection that refused to die until we had done 3 different oral abx, abx shots, and a tonsillectomy.  Classic sudden-onset tics, OCD, anorexia, crazy behavior.  We thought he was growing out of it (less frequent episodes, with less extreme behavior.)  But now he's 8, and his (mild) tics have been present on and off for about a year, and in hindsight I've realized that what is likely AD/HD started creeping in last fall (yet to get an official dx).  So far, I have yet to find a peds neuro who 1. accepts PANDAS as a legitimate diagnosis; 2. knows anything about PANDAS; and 3. is interested in figuring out the underlying cause of my son's non-stop tics rather than throwing him onto the neuropsych medication carnival ride.   I just set up an appt with his ENT to culture his sinuses, since he has had recurrent sinusitis for years and I want to rule out an occult strep infection.

It infuriates me that the PANDAS people are working independently of the TS people, when there's clearly similarities in presentation (albeit the etiology might be slightly different), and a growing body of research that shows that comorbid conditions are typical and not atypical of this population (OCD, AD/HD, anxiety, etc.).  I've been told that TS kids' tics "wax and wane"  (yes, I know that!  but WHY????), that PANDAS and TS is treated the same way (NO, THEY'RE NOT!), and that there is no "cure" for TS (maybe not, but MY SON HAS PANDAS!).  Grrrr... my mommy instincts tell me these MDs are full of sh** and my son's PANDAS is at the root of all this.

OK, rant over.  Anybody have similar experience and/or can offer any guidance?

Edited June 7, 2017 by evolveme