Flare

[mtmom]

I have not posted in a while. My son had an IVIG in October. He definitley was worse before he was better. By Jan. he started to lose his symptoms slowly. In March he was at his best like 75%. Then the symptoms began slowly coming back. PANDAS doctor increased his antibiotic, Zithro, for 15 days and we are still seeing adventitous movements and loss of attention, agitation and some fixations on topics of interest. Then today he told me he had a sore throat while still on the full dose of Zithro. Do any of your PANDAS kids ever show typical sickness symptoms? What should we do?

[Worried_Dad]

Our ds had been making steady progress on the "Saving Sammy" dose of augmentin XR (1000 mg twice daily) until last Fall, when he came home from school complaining of feeling sick and his PANDAS symptoms surged more noticeably than they had in years. Eventually we took him to the local family doc, who took one look at his throat and said it looked infected, probably strep. We kinda freaked - how could he possible have strep throat on treatment-dose aug XR?!?

 

Local doc (still a PANDAS skeptic) prescribed standard zithromax 5-day Z pack, and our ds felt better... but started to backslide after the zith ran out. We took him to the LLMD (great doc, but about an hour away) and got him to prescribe longer-term zith. So right now, he's on both zithromax (250 mg daily) and reduced-dose aug XR (500 mg twice daily). Knock on wood, that seems to be working, and he's regaining the ground he lost last Fall.

 

I don't understand this phenomenon, either, but some kids on this forum end up having to switch from an abx that worked well for a time but then lost effectiveness (or use an abx combo). Different strains of strep? Or just another bacterial infection that triggers the dreaded autoimmune response? Don't know. Anyway, adding the zithromax seems to have helped our ds, so trying a different abx might be worthwhile for your ds as well?