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Why long term abs work for Pandas?


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Just wanted to share that - for our son - 3 rounds of IVIG alone were not enough to beat back PANDAS. An extended course of high-dose augmentin XR (1000 mg twice daily, same dose as Sammy Maloney in "Saving Sammy") made all the difference in the world, and we've seen sustained progress for 9 months on that dosage. Here's a post about our son's situation:

 

http://www.latitudes.org/forums/index.php?...ost&p=40568

 

And here - later in the same topic - is an explanatory post from our resident scientist, Buster, as to why this might be crucial for some chronic cases:

 

http://www.latitudes.org/forums/index.php?...ost&p=40577

 

Hope this helps. You might benefit from reading that entire thread, which includes Buster's original post and lots of other great stuff from him and others. FYI, our entire family recently tested positive for elevated ASO titers, so an infected family may explain why some PANDAS kids need higher doses of abx for much longer durations to stave off a relapse.

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My son's first encounter was 'cured' with only antibiotics. Took 3 rounds of 3 different kinds but none-the-less it did the job, that was 2007. HOWEVER, got a bad episode again in September 2009 which was totally different, much much worse and required much more including IVIG. Not only that, after clearing up in December, he got strep again in February and March 22nd had to do a second IVIG. We're good now, but totally walk on egg shells. You'd think they're was a nuclear holicost anytime hear of strep. We all go into panic mode!!

Also, Sammy, from the book saving Sammy only had antibiotics (and maybe a mood stabelizer) but no IVIG. Go figure.

We do the same thing with the WORD strep or Coxsackie virus!!! RUN FOR THE HILLS I am going to be a mess when she starts school

but so far we are about 4 months post ivig and still doing good.

Tracie

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Ah yes.... I meant prophylactic dose.. I misunderstood the question. That makes sense... and yes my son was on 250mg twice a week when I had him on it prophylactically... I don't think I ever had him on a higher dose than 250 daily though even when not prophylactic.... I wonder if I would have seen something from a higher dose or not but he's just so mild that I hate to bombard him with medicine for long periods of time and high doses. I am grateful he is mild but sometimes I almost think if he was just a little less mild I would not second guess and would go ahead and treat more aggressively..

 

I was under the impression that my child was on long term antibiotics to give his body a chance to heal without having to fight off new strep... so basically it was to prevent him from getting new strep infections. That was what I took out of it from the pandas doctor I saw..

I think that's true of the prophylactic doses, but not of the "high dose" abx some of us are giving our kids. For example, my DS (any many others here) is taking 2,000 mg. of Augmentin XR daily; a prophylactic dose would be more along the lines of 500 mg. per day.

 

It's my impression that, in general, azith doses are provided in lower numbers, but I think that something like 500 mg. daily is considered "high dose" while some families are doing 250 mg. every two or three days as a prophylactic measure.

 

Can anyone else further clarify this? Am I way off base?

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My son's first encounter was 'cured' with only antibiotics. Took 3 rounds of 3 different kinds but none-the-less it did the job, that was 2007. HOWEVER, got a bad episode again in September 2009 which was totally different, much much worse and required much more including IVIG. Not only that, after clearing up in December, he got strep again in February and March 22nd had to do a second IVIG. We're good now, but totally walk on egg shells. You'd think they're was a nuclear holicost anytime hear of strep. We all go into panic mode!!

Also, Sammy, from the book saving Sammy only had antibiotics (and maybe a mood stabelizer) but no IVIG. Go figure.

 

 

 

 

 

Was he on prophalatic antibiotics when he kept getting strep? After IVIG why not prophalactic antibiotics to keep strep away?

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I was under the impression that my child was on long term antibiotics to give his body a chance to heal without having to fight off new strep... so basically it was to prevent him from getting new strep infections. That was what I took out of it from the pandas doctor I saw..

 

 

 

 

That is also what I thought....Our son is on antibiotics now for 3 months. ASO was 1726 and anti dnase was 1920. After 3 months ASO-1236 and antidnase 1348. So...I gusess we continue antibiotics ...for how long...don't know...until he is 20...ten more years???????????

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Our situation is a bit complicated. Our son had done 2 full rounds of IVIG with Dr. K 3-4 months prior to starting the XR. We had seen some very slight improvement in that time, but only maybe 20%, and we were getting desperate. Within a week of starting the high-dose augmentin, we saw obvious progress, and our son commented on it as well. No worsening of symptoms, just improvement. Within a month, many OCD behaviors had melted away. His progress was pretty steady from that point on, not much of the "sawtooth" pattern.

 

So was it the combo of 2 rounds of IVIG and high-dose XR that did the trick? Wish I knew. But - in any event - we didn't see a flare of symptoms after starting the "Saving Sammy" dose.

 

 

Worried Dad, did your son's symptoms get worse when you increased the Augmentin or did you notice favorable results somewhat soon?
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I was under the impression that my child was on long term antibiotics to give his body a chance to heal without having to fight off new strep... so basically it was to prevent him from getting new strep infections. That was what I took out of it from the pandas doctor I saw..

 

The verdict on this is definitely still out, and there are conflicting perspectives...(from my extremely limited understandings!)

 

Antibiotics may be immune system-modulating, and\or anti-inflammatory, and\or staving off possible strep (though I no longer believe that the staving off strep is the REAL key here...only hopeful!)

 

We am more and more convinced that the REAL effects of antibiotics will ultimately effect OCD in the future in similar ways--granted, may be way off here, but the logic of the anti-inflammatory effects, and (perhaps) just as, if not MORE important effects of immune system modulation, is the key--so it is actually TREATMENT when we give Ps kids abx, not just a preventative\hopeful measure, it is a treatment effect of the antibiotics.

 

--just my opinion, of course :wacko:

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I was under the impression that my child was on long term antibiotics to give his body a chance to heal without having to fight off new strep... so basically it was to prevent him from getting new strep infections. That was what I took out of it from the pandas doctor I saw..

 

The verdict on this is definitely still out, and there are conflicting perspectives...(from my extremely limited understandings!)

 

Antibiotics may be immune system-modulating, and\or anti-inflammatory, and\or staving off possible strep (though I no longer believe that the staving off strep is the REAL key here...only hopeful!)

 

We am more and more convinced that the REAL effects of antibiotics will ultimately effect OCD in the future in similar ways--granted, may be way off here, but the logic of the anti-inflammatory effects, and (perhaps) just as, if not MORE important effects of immune system modulation, is the key--so it is actually TREATMENT when we give Ps kids abx, not just a preventative\hopeful measure, it is a treatment effect of the antibiotics.

 

--just my opinion, of course :unsure:

 

I'm with you TMom. The research that's emerging regarding anti-inflammatory and glutamate modulation via abx suggests that there's more here than just fightin infection or calming immune system.

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We are newer to this forum...I have an ASD child with PANDAS (you guys thought you had it rough...). We are doing IVIG (he will be doing IVIG for 12-18 months) and antibiotics...penicillin seems to be working for us now but may have to switch to Augmentin. His teeth (even though he brushes regularly) have just started turning yellow after about three weeks on abx. Anyone else experience this..is this the least of my worries? It's a social thing though too...any tips?

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I was under the impression that my child was on long term antibiotics to give his body a chance to heal without having to fight off new strep... so basically it was to prevent him from getting new strep infections. That was what I took out of it from the pandas doctor I saw..

 

The verdict on this is definitely still out, and there are conflicting perspectives...(from my extremely limited understandings!)

 

Antibiotics may be immune system-modulating, and\or anti-inflammatory, and\or staving off possible strep (though I no longer believe that the staving off strep is the REAL key here...only hopeful!)

 

We am more and more convinced that the REAL effects of antibiotics will ultimately effect OCD in the future in similar ways--granted, may be way off here, but the logic of the anti-inflammatory effects, and (perhaps) just as, if not MORE important effects of immune system modulation, is the key--so it is actually TREATMENT when we give Ps kids abx, not just a preventative\hopeful measure, it is a treatment effect of the antibiotics.

 

--just my opinion, of course :unsure:

 

I'm with you TMom. The research that's emerging regarding anti-inflammatory and glutamate modulation via abx suggests that there's more here than just fightin infection or calming immune system.

 

 

The research is emerging, no doubt!!!

 

The glutamate modulation issue could be HUGE for our kids and ALL kids with OCD...

It seems there is a definite connection -- Hopefully, prayerfully we will see it soon.

 

Coopsmom, I would ask a dentist about the teeth issue, just to see what she\he might recommend. Take care, TMom

Edited by T.Mom
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