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How long do your kids episodes last?


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My daughters Pandas has starts in March un-related to strep and is completely gone by June for the last 3 years.

With out any intervention or antibiotics it goes away on it's own.

 

Does anyone else have a similar experience? With my research I seem to read a lot of cases where it's on and off the whole year. Also, after it's over she is 100% normal again with nothing lingering.

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My DS12 first episode started in Mar/April 2008 after an Upper RI. Tics and odd behaviors etc began about 6 weeks after. It took about 12 to 16 weeks to fully recover. Second episode was in 2011 in July(ear infection and sinus infection) treated with 5 days Zith and most of his symptoms(eye rolling the worst) went away in about 12 weeks. He did not look well after the 2nd episode and he had mild off and on symptoms throughout the year. Finally got him to see Dr B in May 2012, diagnosed with PANS with a mycoplasma infection and allergies. He's been on Azithromycin ever since. He has not had an episode since ABX started, but still has recurring sinus issues. Now on allergy shots. Not sure where we go from here, but as long as he's doing good we're happy.

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for dd9, she had a year long episode with terrible moments and somewhat better days. in all, the trajectory has been toward improvement.

with ds4, similarly, a long episode with very gradual improvement and many exacerbations along the way.

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My kiddo, it retrospectively appears, had PANDAS for a long time before we actually developed enough symptoms to pinpoint it down as PANDAS. From the age of 4 or so on up, she has had a variety of bouts that lasted a few days to 6-8 weeks that had only 2-4 symptoms that were always attributed to one of her other dxs so they were never treated and spontaneously resolved.

 

In Sept 2011 she developed enough spontaneous symptoms (an entire page single spaced, typed) to pin down a PANDAS dx, and she has only been 95% for one month since then (July 2012). Otherwise, we have been on the roller coaster of completely debilitated to roughly 70% over and over again since then.

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First exacerbation was about 6 weeks to recovery after strep. A bunch of ear infections caused flares that were cleared within 10 days with ABX. The worst we've experienced was a nearly 3 month long episode this fall brought on by a coxsackie viral infection.

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  • 2 weeks later...

Almost 6 months! With many abx, 2 IVIGs, etc.

 

I believe there are many variables that play into the episode severity and duration:

- Age of the child during episode

- How long they had untreated/undiagnosed PANS

- Amount of triggers/infections

 

DS has had what we though were unique behaviors since he was 3. He refused to write in first grade, was rigid, suffered a from walking pneumonia in 4th grade and started exhibiting a bit if rage in 7th grade and things were more OCD, but we never thought PANS. It all spiraled this fall and he hasn't gone to school since January. He looks and talks better now and moves around more, but this is till very far from functioning : (

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