I apologize if any of my comments are repetitive since, admittedly, I skimmed some of the comments in my quasi-agitation…
My husband and are I both in the health field, he being a psychiatrist, and we’ve had 4 kids with PANDAS and a 5th not officially diagnosed…having been submerged in this for over 11 years, with treatments ranging from episodic antibiotics, long term antibiotic prophylaxis, steroid bursts, alternative natural treatments, MULTIPLE IVIG treatments using varied protocols, and any of the above either alone or in conjunction with psychiatric medications to aid in symptom relief before the PANDAS protocol effected a refuah, participation in therapy, CBT, and tic disorder clinic offerings, consulting with all the top PANDAS personalities out there, including the talented one from BP whom was referenced in comments above..and currently considering plasmapheresis for the PANDA bear of mine historically most resistant to .treatment, , etc, etc, etc I feel qualified to add the following…
Pandas kids are notorious for NOT FITTING INTO ANY RUBRIC!!! There is tremendous over,as of symptoms that are easily misdiagnosed as one of a sundry other emotional, developmental, or psychiatric disorders but for our purposes in this discussion what I would like to highlight is the following…
1- The hallmark of PANDAS is SUDDEN ONSET of neuropsychiatric symptoms…
2- symptoms wax and wane and are quickly swapped for other puzzling, out of nowhere seemingly disjointed or unconnected symptoms…lightbulb!
3. Severe, personality changes are common…from one day to the next, as is sudden regression in math skills and handwriting…tell tale signs in many kids, as are severe, sudden separation anxiety, bed wetting, and /or restrictive eating to name only a few…
4. It bears mentioning that lo aleinu trauma of any type should be ruled out before settling into a PANDAS diagnosis
And far from lastly….5. At a certain point, ASO and anti DNase-B blood levels ( strep titers) are no longer the measuring stick for a PANDAS diagnosis or flare up….any exposure to infection or flu, or other illnesses can trigger a flare up and also, it is patently false that only current strep infection necessitates PANDAS treatment….folks, I CAN TELL YOU UNEQUIVOCALLY if a child in my kids’ class has so much as a cold….
H’ should bring all these kids a quick refuah and their parents relief by restoring them to their healthy baselines!