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michaeltoan016

Can you help me solve this problem?

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I am curious I have been researching chances of relapse and this page seems to indicate that if given treatment for a year (did I read that right?) or is it the stats were taken a year after treatment...that there is a very small chance these children will have relapses if the original strep or whatever bug is taken care of..I believe she said 25% had a very minor pickup in symptoms with only 2% of the 200 have a complete relapse...so how accurate is this? does anyone have facts and percentages of what the chance of a relapse is? I am doing everything I can for my boy and just am looking at the future....hoping. He has come back around to pretty much 100% normal, we have completed one month of Augmentin with at least 3 more to go...This has worn me down and made me depressed...I pray for all your childern and hope we can put an end to this and let these kids get back to their lives without ocd and tics.

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I don't see a link to the page, but highly doubt that there is a valid conclusion that treatment for a year provides assurance of no relapse. 

Relapses are very common, and there have been trials of abx that document relapses or flares, even after a year of prophylactic doses.  I hope this comment doesn't depress you further, but if so there is still hope.  Our child improved dramatically with puberty - though not all do.  I have found that the job becomes chasing all the triggers (including non-strep), as we don't seem to have a cure for the immune dysfunction, except possibly puberty.

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I have to agree with bobh, though I'm sure that's not what you want to hear.  I don't think that PANDAS has been recognized long enough or consistently enough, or treated properly long enough or consistently enough, to have any true, longitudinal statistics with respect to "100% cure" or relapse probability.  On top of which, there isn't even a well-defined or implemented treatment protocol that works for all cases, all of the time.  There are practitioners who will tell you that antibiotics do not work long-term; that IVIG is the only way to "cure" the condition; then there are those who believe that antibiotics do work, without IVIG, and those who believe you try antibiotics first, and if that doesn't eradicate the condition and resulting behaviors, THEN you move on to IVIG.  Or a tonsillectomy.  Or steroids.  Or various combinations of all of these.

In our case, we had the first episode at age 6.  The second at age 7.5.  Then not another one until age 12; that was the "big one" that turned everything on it's head and took a long time (more than 2 years, full-bore, plus another 2 in "partial" interventions) to successfully address.  On the positive side, I can add that now (age 21), my DS is no longer "strep-reactive" and seems to have a fully functional immune system that operates as it should.  How much of that is due to physical maturity, how much is due to previous treatment, I don't think anyone can tell you.  (And even if they did, they'd be guessing.)

I just wouldn't want to set you up for a fall by feeding false hopes.  Rather, in your shoes, I would proceed with "cautious optimism."  I have heard, anecdotally, of kids who were treated very quickly, responded very well, and appear to have gotten past PANDAS altogether.  But as I've been participating on this forum for many years now, I can tell you that for every "quick" success story, there are at least 5 or 6 attesting to a protracted battle.  It's not always intense or awful, but it does frequently drag out, or dissipate, only to return.  Hope for the best, prepare for the worst would be my motto in this regard.

All the best to you!

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Thanks for this insight. I am guilty of wanting it to be over soon. My wife and I were broken hearted tonight watching our beautiful daughter turn into some sort of possessed demon. Only to have her later break into tears and sob about how she could not control how she felt and how she acted. Scared the bejesus out of us, that is for sure. I thought she was getting better for the last few days, but in the evenings the anxiety and anger is intense. The School counselor says the have been some of her best days. But she was physically trying to kill herself tonight. Then she is so distressed that she thinks we are disappointed in her in some way. One minutes you trying to keep her hurting herself or me and the next trying to comfort her.

Edited by lordchallen
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Take heart.  My wife and I have been there too.  If the child is young, it may be very distressing to see a parent in distress, so when I was about to burst into tears, I would tag team my wife into the scene, and go have a good bawl somewhere out of earshot.

One fortunate thing, is that in time, the child seems to forget the worst episodes.  I think going along with that natural defense mechanism in the short term is a good approach - if you want, you can talk about it all when she is 21, and (highly likely) much better.

It definitely seems to be a common experience that a child can hold it together in the company of strangers, and then let loose at home.  Don't let this convince you that the disorder is purely psychological.  I think of it as a testament to mind over matter (in this case, "matter" being the anti-neural antibodies).

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