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Do PANDAS symptoms get worse with each strep infection?


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Guest pandas16

Do PANDAS symptoms get worse with each strep infection? or is kind of what you have at onset what you stick with? If you have OCD, are you likely to develop more stuff?

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I agree with mamapanda, our son's first episode was his worst - but it was also his longest - 6 months untreated before dx (everyone kept telling us it was the terrible twos - they were wrong!)

 

We have seen the sypmtoms slightly change with each infetion/exposure, particularly the OCD. Some of the classics are there (everything in 3's, reassurance questions) but the rituals have evovled. So far, we think it's more developmental than anything - this started for him at 19 months, and many of his rituals actually revolved around the way WE did things for him, versus things he did himself. Now, those rituals that involved us doing things have subsided, and new ones of his own have replaced them.

 

Our tics have also progressed, but not increased. It initially was a facial grimace, now it's more of a teeth chattery type movement. The grimace is gone, replaced by the teeth chatter.

 

Personally, our theory as to why the intial epsiodes were the worst is because now we're hypersensitive to changes in his behaviors. We don't let things go for more than 2-3 days of observation before we're testing the whole family for strep. (And for certain indicators, bed wetting for example, we don't even observe that long!). We start dosing him with Motrin right away and are usually back on abx within 72 hours of seeing an increase/appearance of OCD or symptoms. I truly believe that catching it early and trying to stop the inflammation each and every time makes a difference on how severe the episode is.

 

Our least severe episode was this past February - he wet the bed, and the next morning he started hopping and clapping in 3's through the kitchen. Most parents might think that this wasn't unusual for a 3 1/2 year old, but we suspected otherwise. We had BOTH kids in the pediatrician that day (our son within 2 hours) and both were positive for strep. My non-PANDAS daughter didn't even have a fever, sore throat or any symptoms whatsoever - we just had her tested because we always do when he turns up postive. With that infection, we had a ramp up in OCD, barely any tics, but not as severe as past episodes, and it was far more managable to get back to "baseline" that other infections. It barely caused a noticable "blip" in our family functioning.

 

My husband and I laugh that we're more PANDAS managers than parents sometimes - because that's what we see it as, we're managing his condition right now - always on the ready with Motrin and abx!

Edited by airial95
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My son's second strep induced exacerbation was worst than his first. His third lastest the longest.

 

With the second and third ones, strep was caught and began treatment within 12 hours of onset. So, in my child's case, catching it fast may not make a big difference in severity.

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For our ds, each exacerbation (without effective abx treatment) became more severe. That's what really, really scared us as parents. But he's doing very will now after almost 2 years on augmentin XR, so we're keeping our fingers crossed that the darkest days are behind him!

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I have two girls with pandas- in short "no" we have not seen a worsening with subsequent infections.

 

youngest daughter:

 

initial onset with strep- very severe- her worst

relaps with H1N1- stopped immediately with steroid burst

relaps with virus- bad- but not as debilitating

second strep triggered episode- bad again, debilitating, but for less duration- maybe due to treatment- however the 100% improvement has proven to be a bit more elusive.

 

 

oldest daughter

 

initial onset with strep- mild- ish

relapse H1N1- worse, but short lived due to treatment

relaps with virus- horrific- had pex

relapse with virus- bad again (nowhere near last relapse)

relapse with strep- fairly mild- due to treatment

 

GO FIGURE!!!!

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Hi - for us the first two episodes were the worst but each subsequent episode, from about the fourth episode on, left us with some lingering symptoms.

 

We haven't been symptom free for about 14 months. Prior to June 2010 we always got back to a symptom free baseline. Our first recognised episode was 2008.

 

Our dd has had flares in response to strep, myco?, other viruses, baby teeth falling out and an acute food allergic reaction.

 

In the early days abx, time and steroids would do the trick. Now it appears that it has to run it's course and proph abx didn't seem to help us much more recently. She is now on no abx at all.

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