h202 Posted January 28, 2019 Report Share Posted January 28, 2019 Hi - I posted most recently back in November when DS(7) was having his first flare. His initial onset was last winter, and with abx he returned to 100% by summer. In sept we took him off abx, and 7 weeks later he had a minor flare. Re-started abx, and the flare disappeared immediately. His specialist advised continuing abx until at least the next appointment (in two weeks). After the November flare, his augmentin dose was dropped by 30% (convoluted story that the original dose was technically a bit high for his body weight, but they didn't offer pills for his body weight. So now we cut ONE and a HALF clav250 125mg tablets twice a day - which is treatment dose for his weight). It's been 3 months and we just confirmed yesterday that DS started another flare last week. His early onset symptoms are increased hyperactivity and new irritability. Because he already had adhd prior to the pandas, it's not until we see him get irritable that we know it's a flare. His behavior is still mostly pretty great at home. It's only at school that he's likely to have more serious behavioral issues. (during his acute onset last year, he had moderate to severe problems at both home and school that required withdrawal from school) No idea what the trigger is. Our household is pretty healthy, no one's been sick, no loose teeth, etc. But he attends school - so obviously could get exposed to anything there. He has never tested positive for strep on a swab or culture (nor have mom and dad). However, he has consistently high dnase titers (upper range is ~275, and he tested 1350 during his acute event, 850 during his november flare, and 750 during xmas break when in remission). I doubt he would test positive for strep now, but titers would probably still be high. At the advice of our specialist at the last appt in november, yesterday i started dosing him 400mg of advil three times a day. He also takes his regular adhd medication, augmentin, plus probiotics, D3 and fish oil. I am calling his specialist this morning for next steps. Just curious what everyone on here recommends for treating a flare when you are already on treatment dose abx. Should we request going back up to the slightly higher abx dosage? Steroid burst? (during the acute event last year, we did both a steroid burst and then 30 day taper - which caused immediate 100% improvement but benefits went away within days - but not sure if the steroids helped contribute to his longer recovery?) Are we at a place where we need to consider ivig, etc etc - even if his flares have been very minor? Is the fact that he's flaring at all (whether minor or major) mean that we need to bring out the so-called big guns? Link to comment Share on other sites More sharing options...
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