Flare? or reemergence after stopping abx?

[h202]

DS(6) was diagnosed with pandas in April.  Symptoms likely started 5 months before that, but he really fell off a cliff in February.

His Pandas is not classic with tics and classic OCD.  Rather, he looks more hyper, disengaged and autistic.  DS had a previous adhd diagnosis at age 3 and has always had some autistic characteristics.  

Pulled him out of school when diagnosed in April because he was unable to function there.  Started Augmentin in April, and saw gradual improvements over 2 months.  After two months on augmentin, he seemed much improved at home but hard to tell because school is his real trigger.  But he still seemed very moody all summer.  Ultimately decided his adhd meds could be contributing to the problem, and dropped the adhd meds slightly.  That immediately had a big improvement in his mood.    

(We also tried some steroids during this time -- always with freakishly fast, good results -- that ended within 2-3 days of stopping.  I ultimately decided the improvement had nothing to do with pandas, and more to do with his adhd, as there is literature that steroids improve adhd and autistic symptoms significantly. The steroids didn't feel like we were getting our kid back, but rather like we were getting a stepford wives version of our son).  

Started school in August and things went pretty well.  By this point, it was clear he was 100% recovered and probably had been for a while (the summer moodiness was probably related to the adhd meds).  Decided to taper down the abx, and on Sept 15 we stopped giving him Augmentin altogether.  He had a few days of dicey behavior, but then reverted to being well behaved.  For the following six weeks, school went great.  Teacher reported that the 504 we had previously requested was barely needed.  Then we got word that on oct 26, 29 and 30 he had weird, bad behavior in class. We hadn't seen any problems at home and thought the teacher was overreacting.  But a few days later, we saw some of the first creeping signs of his pandas: hyperactivity, stereotypies, etc.  He was otherwise in good spirits, so we couldn't conclusively say it was pandas.  But then this Tuesday night, he was angry, oppositional, defiant, saying gibberish, disengaged.... not as bad as he got last year, but my husband and i could definitively say he was having pandas symptoms again.  Started Augmentin and ibuprofen that night, and he was pretty recovered 24 hours later.  We are doing a 10 day course at the advice of the Rothman Center, and then will reassess.  But if we have 2 more days of his current behavior, i think we can say he is back to 100%.  

So now i'm wondering: is this a flare? Or is this the reemergence of his original course of pandas?  A distinction without a difference?  There were 6 weeks between stopping Augmentin and the first potential sign of pandas.  Eight weeks between stopping Augmentin and the "it's clearly pandas" moment we had on Tuesday.  I know some people need to be on Abx permanently -- doctors aren 't sure but think it's because either the infection never really goes away, or they have suppressed immune systems, or maybe that the Abx provides anti-inflammatory properties.  But i see people on this site talk about how the symptoms return in those cases within days -- much like they did for us when DS stopped steroids.  But what about if the symptoms come back in six weeks or more?  

Possible triggers for a flare: exposure to any one of the million kids in his school who are currently sick (we've had several reports home of strep from his school); dad had a cold (not strep) 2 weeks ago; DS had a cold (not strep) 4 weeks ago, DS has had a ton of "dental activity" in the last 2 weeks (wiggly tooth that fell out on Saturday, and some serious dental scraping on Friday  - but the dental appointment and tooth were after he first started showing symptoms, but a few days before the symptoms got worse).   

The reason it matters to me if this is a flare versus the inevitable reemergence following stopping abx:  If it's the latter, we presumably need to be on Abx for years. If the former, we can probably deal with flares as they happen and start to predict them. Maybe address them even though ibuprofen.  Obviously, like all parents on here, i'd rather my son not be on abx long term if he doesn't have to be. 

Anyone have any ideas?  Or it's all just the unknown netherworld of pandas....? 

[Cmac]

Hi,

Just seeing this post now and we’re kind of going through something similar with my DS7. Did you ever figure it out? Was it a flare? I just got my son tested for strep today (rapid was negative) because of some troubling pandas signs returning that started this whole journey (hallucinations).

This is a roller coaster for sure.

[Gpookie]

You described my youngest to a T. His bad days were just like you described: hyper, disengaged and mdly autistic like.

This is why he is on year 5 of longterm abx and doing fantastic. Also needs LD IVIG and antivirals for immune deficiecy. No ADHD meds needed.

This  works for him.  Never needed accomodations, never missed school, pretty much straight As, great and thlete. He is 11 now...