h202 Posted November 28, 2018 Report Share Posted November 28, 2018 We just returned from an appointment with our specialist following son's (7) first flare. In brief: - Son's first symptoms of pandas cropped up either last November (in earnest) but exploded in February. On a scale of 1 to 10 (10 being the worst) relative to other pandas' kids as reported on this and other sites, i'd say he got as bad as a 5 or 6. His symptoms were increased adhd, new anger and emotional liability, and some autistic qualities. - Two months after the explosion (but potentially 4-5 months after very first symptoms), he was diagnosed and treated with augmentin. We saw positive changes at two weeks, and then by six weeks he was at 90%. Only remaining issue was lingering emotional liability (uncharacteristic moodiness, anxiety and irritability), which went away a few months later when we adjusted his adhd meds. Son was on abx for 5.5 months total. - Seven weeks after dropping the abx, son had his first flare (late october). Symptoms were minor at first (1 out of 10 on the pandas scale). On day 10, he got uncharacteristically angry about a few things and was acting a bit autistic, so it was clear he was in a flare (3 out of 10 on the pandas scale for exactly one day - still not bad) and we started abx. 12 hours later he was back to 90%. Within 10 days he was back to 100%. Stayed on abx for the whole 20 day duration with no additional issues. The whole flare lasted approximately 3 weeks (from 100% back to 100%), and it was -- in hindsight -- not difficult at all. - Son tested negative for strep several times this fall and no symptoms of strep. After the flare started, he did bloodwork with high dnase antibodies (850 with normal range 350). We don't have a baseline to compare against. - Just went to the specialist for what i thought was a routine follow up post-flare, and he wants to keep son on abx for 3 more months -- even though he is at 100%. His theory is that the worst cases of pandas are those with increasing severity of flares that are less likely to respond to treatment, and so we should avoid flares at all costs. The fact that son only went seven weeks after stopping abx suggests that his immune system might not be sufficiently repaired to deal with future triggers, and we'd rather not test it out. He couldn't say how long we'd be on abx, but we'll reassess in 3 months, but he could be on much longer than that even if he's symptom free for the next 3 months. He said the abx will help avoid strep infections, but also may serve to bolster the immune system to protect against flares once we stop abx. I'm surprised they are recommending this because this practice has previously told me that they are not big on long term abx -- and they are well known on this forum and elsewhere as being very conservative on pandas treatment (following academic/research recommendations, and less on anecdote/experimental). Son went from having a moderately bad pandas onset that took 6-8 weeks to respond to abx, to having a flare that had almost immediate responsiveness to abx. Everything i've read about prophylactic abx suggests it's reserved for the most severe cases, and that almost all pandas cases (i.e., not just the most severe) have a relapse-remitting course of flares. So the fact that son had a (minor) flare doesn't seem severe to me, but par for the course, right? I know lots of people on this forum have kids who were on long term abx, but my read was that it was for kids who had severe pandas, never reached 100% while on treatment , and/or relapsed as soon as they stopped the abx. Just wondering what other people's understanding is of the proper use of long term abx, if the treatment protocol has changed, etc. Anyone have any thoughts? Link to comment Share on other sites More sharing options...
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