Strep is the “S” in “PANDAS” - something about the strep infection seems to become resident in the brain causing the immune system to attack it. MRIs show a speckled inflammation in certain areas of the brains of kids with an active PANDAS symptoms / Strep infection.
We worked with one of the pioneering doctors when our child was suffering, and she said their best theory is that there was a version of strep which caused Rheumatic Fever / Rheumatic heart infection, which affected many kids each year. Sometime in the 90’s that dropped off, and then they started to see kids with strep infections and then sudden onset OCD, tics, mood lability, and sleep disorders.
Her theory was that the strep which caused Rheumatic fever mutated to instead stay resident in the brain rather than the heart, and the immune system kept trying to attack it, especially when triggered by other stimuli like exposure to other colds, viruses, or allergies, leading to “flares” of the illness.
We had a dramatic proof that the illness was related to our kid’s symptoms when we discontinued the antibiotics and his symptoms flared terribly.
Ultimately, we were able to achieve symptom reduction through a long course of antibiotics, tonsil removal (which seems related to the immune system’s over-reaction in PANDAS cases), and a dramatic reduction of exposure to other illnesses while we all were in covid lockdown for years.
I know other families who don’t achieve acceptable symptom reduction move to IVIG after trying other treatments, and have found some success with that. I’ve also heard similar success stories from people with OCD/Tics following Lymes diagnosis who get IVIG.
It may be worth seeing if you can find a doctor willing to examine the issues you’re experiencing as a post-infection syndrome and discussing inflammation reduction protocols and other treatments.
