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supermom13

time between strep and tics onset

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It has been 2 months since my 5 year old son started having facial tics along with throat clearing. His facial tics started March 25th at 7pm.  I was with him all day and then at 7pm he was watching his ipad and boom it started.  the facial tics included: facial grimacing, eye blinking, eye widening, nose scrunching, a bunch in his face.  A throat clearing tic surfaced a few days later. Those tics happened 95% of time when watching tv and or ipad.  the other 5 % was when he seemed relaxed, in the car and reading a book. The facial tics lasted about 3.5 weeks after a bad stomach virus and he threw up 10 times, the facial tics for the most part went away. ( i occasionally see a eye dart or a eye brow widening, but very rare) He still has the throat clearing tic that happens mostly when playing or running around.  Sometimes when he gets upset or excited he does a teeth grinding thing.  I feel the teeth grinding thing he does purposefully only cause when i ask him why he is doing the teeth grinding thing he can stop it.  Or he tells me his teeth are itchy.

he tested positive for strep throat culture back in November, 4.5 months before the tics started.  we think he got strep Nov 4th but didn't know until Nov 7th/8th when he threw up and had separation anxiety going to school. We took him to the doctor and he tested positive for strep.  I feel horrible that he went 4 days we think with strep before we knew.   the strep was cleared with a 10 day dose of Amoxicillin, then December 1st he developed a night time only cough for about 6 weeks, was put back on antibiotics this time Augmentin for 10 days even though he tested negative for strep but they think he might of had a ear infection because his ear looked a little infected  the antibiotics did not work for the cough so back to the doctor and he was then put on Flonase and the cough stopped. we had to stop the Flonase as it made his nose bleed but once we started the zytrec the cough stopped completely.  He is still on zytrec because his seasonal allergies are just horrible but he still throat clears when playing. 

My question is can you develop strep related tics 4 months after the strep test was positive.  He has been swapped 2 extra times for strep and they came back negative.  My pediatrician and neurologist both said if it was strep related tics and or pandas he would be acting different and that those tics usually start soon after the infection and not 4.5 months later.  So for now he is diagnosed with transient.  he is a very happy outgoing kid but sometimes gets angry if something doesn't go his way ( for example his brother taking his toys etc).  he seems irritable in the morning as well ( not sure if that is due to zytrec)  but i know that could be 5 year old behavior.

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Because you've already had instances in which the tics were temporally associated with a strep infection, I would be alert because sometimes the behaviors can be "the canary in the coal mine."  You may see them before, or even instead of, classic strep symptoms.  There are anecdotal reports of kids who find themselves in a carrier state, without active infection but reactive behaviorally, as well as kids who react to being exposed to strep, even though they don't "catch" it.  The temporal relationship between date of infection and behavior onset can also change with repeated episodes; also, if your son has developed PANDAS, it is possible that he's still strep-reactive, even though the swabs are not coming back positive. 

My DS never had a positive swab, but when we had his strep titers (antibodies) tested via blood test, his numbers were way out of range (high); that can be an indication that a true auto-immune dysfunction has been set off whereby the body continues to produce antibodies even when the invader has been "conquered," or the invader could have found its way into some "safe harbor" (the gut, the sinuses) and thus still be signaling the body to make the antibodies, even though the infection isn't classically "active" at the time.

Sorry to say, but based on families' experiences reported here, it seems rare that a single, 10-day course of antibiotics is sufficient for kids who are predisposed to either strep or PANDAs, though your son's young age is likely a good sign that his condition is not chronic.  If possible, I would see if I could get a couple of blood tests for strep titers run (ASO and anti-d-nase-b) to rule out any possibility that something classically asymptomatic isn't still lurking.

All the best!

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My DS 13 has been most impacted by OCD, but suffered from 6 tics from 2012-2016.  Five of the 6 tics went away after 30 days on a high dose of Augmentin, and never returned.  The 6th one went away in 2017 after a high dose IVIG, and never returned. He also did experience one additional tic temporarily in 2016 after the 30 days Augmentin.  This was a facial grimace.  This went away after treating him for a yeast infection.  I’m recently discovering the huge impact of a yeast imbalance.  I think PANDAS /PANS kids tend to have issues with yeast even before they are on antibiotics.  I give my son Saccharomyces Boulardii, in addition to his regular probiotic.  He also takes Candicid Forte.  

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Supermom -- What I mean is that, anecdotally anyway, it generally seems that the younger the kid when the reaction to strep (PANDAS) is caught and treated, the more responsive they tend to be to treatment, and therefore the better chance that, treated quickly and thoroughly, it won't become a "chronic case."  And by chronic, I mean a case where the behaviors (tics, OCD, separation anxiety) get to a point where they won't relent, let alone dissipate entirely, and the kid can become reactive not just to that primary trigger (strep) but also to other microbes and/or allergens. 

Again, pretty much anecdotal evidence only at this juncture, but kids like mine for whom the condition isn't properly diagnosed or treated until they're older, and they've been through several rounds with it earlier in life that were either misdiagnosed or undiagnosed altogether because the illness presentations were not "classic" (i.e., no positive swab test), seem to have a harder time bouncing back, both medically and psychologically.  My son was 12 before we got a PANDAS diagnosis and treatment, but he had been behaviorally symptomatic (OCD) since the age of 6, and, we suspect, likely dealing with strep issues well before that due to chronic ear infections since before he was 3.  So, by the time he got real treatment, he'd dealt with OCD and separation anxiety and an inflamed immune system for years, and he had a hard slug out of it all.

On the other hand, there have been families with kids here on the forum who were diagnosed and treated at 3, 4, 5 and 6 who seemingly have "recovered" fully and do not seem to deal with much, if any, residual affects.  So my take-away from those comparisons is that catching it early and treating it early can only be a good thing!

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