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Why long term abs work for Pandas?


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My sudden DS8 started with vocal/motor tics one month ago. After blood testing (DNASe titers extremely high) and a consultation with Dr T, he started abs 13 days ago.

First augmentin, then azitromach.

Then we test the whole family and mu husband and other boy were positive on strep and I had high titers too.

Now we are all on abs.

So, I believe my DS8 infection is gone, but still,we don't see improvement.

Now I don't what I should do, continue the Pandas approach or not.

 

So the question that probably everybody is asking , why the long term high dose abs? what infection are we trying to kill?

I understand why the preventive dose is administrated, so those kids don't get a new infection.

 

Are there any Pandas kids that got cured only from abs?

Is IVIG the only solution?

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that is the question and partially why docs are in disagrement about the existance of pit/pans

my ds would get strep, get abx, complete remssion...till 3-4 months the repeat....i think we only had 1 episode in the summer....

but now..waiting on final myco p results....i believe his system may be cleared of all infections....

how ever..his body doesn't know that...it is in overdrive...no brakes.....and that is why some may need ivig....

i think i got that right!?!?!?!?!

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So that is my point, after a regular dose of abs, ok, maybe a little bit longer, the body doesn't have the infection any more.

The problem is that the immune cells are confused and still fighting a "now longer exist" infection.

That's why IVIG is the only solution.

Am I right?

 

If so, why still PANDAS kids are months and months on abs?

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So that is my point, after a regular dose of abs, ok, maybe a little bit longer, the body doesn't have the infection any more.

The problem is that the immune cells are confused and still fighting a "now longer exist" infection.

That's why IVIG is the only solution.

Am I right?

 

If so, why still PANDAS kids are months and months on abs?

 

I am pretty sure that is the case for some.

when life was good and i was (more)ignorant..i would tell the docs...hey did you ever notice, ds only tics when he has strep...."no correlation mrs xyz".....after a while i realized there was...

then when ds tic changed at 5...i found pandas....but still didn't worry if the docs rolled their eyes...as, we would go in ,,,ds presents with strep or other infection...we get abx and tics go away...

SO just abx can work.....

but i think my boy has had tooooo many...and his system just decieded it was done fighting

 

but before you jump to anyting .....see if there may be some other infection..lymes, myco p...ebv...and there are other autoimmune tests that may be run..

but doc k....and as a parent ...even w/o the test...you just know what it is....the tests do help...and they may help when you go to fight ins, other docs..family...etc...

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As for long-term use of abx . . .

 

Well, for one thing, there is concern about intracellular strep which, as the cell it inhabits eventually expires as all cells eventually do, the strep is released again, essentially creating an ongoing infection that drives the antibody response. If abx continue to be in the system, they can assist in killing off that newly-released strep and help keep the antibodies calm. Prophylactic doses may not be sufficiently strong to deal with this.

 

Another consideration is the fact that some abx are known/thought to have anti-inflammatory properties, which assist in an entirely different way. There was a previous thread here on that.

 

Finally, in the case of a drug like Augmentin or Augmentin XR, with a clavulanic acid component, clav acid itself is now being studied for its potential antidepressant characteristics!

 

Too much we don't know, a little we do. It's really more experiential . . . if it works, it works. If it doesn't, it doesn't. :ph34r:

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As for long-term use of abx . . .

 

Well, for one thing, there is concern about intracellular strep which, as the cell it inhabits eventually expires as all cells eventually do, the strep is released again, essentially creating an ongoing infection that drives the antibody response. If abx continue to be in the system, they can assist in killing off that newly-released strep and help keep the antibodies calm. Prophylactic doses may not be sufficiently strong to deal with this.

 

Another consideration is the fact that some abx are known/thought to have anti-inflammatory properties, which assist in an entirely different way. There was a previous thread here on that.

 

Finally, in the case of a drug like Augmentin or Augmentin XR, with a clavulanic acid component, clav acid itself is now being studied for its potential antidepressant characteristics!

 

Too much we don't know, a little we do. It's really more experiential . . . if it works, it works. If it doesn't, it doesn't. :ph34r:

 

I can not find the thread that talks about abx are known/thought to have anti-inflammatory properties, do you remember which abx? or could you point me to that thread? thanks!

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I can not find the thread that talks about abx are known/thought to have anti-inflammatory properties, do you remember which abx? or could you point me to that thread? thanks!

 

Sorry, I couldn't find the thread with any efficiency either; it might have been a tangent off another line of inquiry.

 

However, I was able to dig up the research article someone had posted on the thread (Kim or Kimballout, I think), and here's a link to that actual research:

 

Immunomodulatory Effects of Antibiotics

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Sorry, I couldn't find the thread with any efficiency either; it might have been a tangent off another line of inquiry.

 

 

Someone replied a thread of mine the other day to tell me that Zithromax/Azithromycin has anti-inflammatory properties whereas the Augmentin XR she is on now doesn't. That was news to me so I did start ibuprofen as recommended a few times per day (so far no improvement but it's only been two days).

 

 

Hope that helps,

Amy

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I can not find the thread that talks about abx are known/thought to have anti-inflammatory properties, do you remember which abx? or could you point me to that thread? thanks!

 

Sorry, I couldn't find the thread with any efficiency either; it might have been a tangent off another line of inquiry.

 

However, I was able to dig up the research article someone had posted on the thread (Kim or Kimballout, I think), and here's a link to that actual research:

 

Immunomodulatory Effects of Antibiotics

 

Sorry - I can't take credit for this article, but it is very interesting and I will add it to my collection!

 

I also want to add t hat some kids are on antibiotics for extended periods of time because they STILL test positive for strep. I spoke to one Mom who has a son with strep in his gut and it has been there for well over a year - ASOs and DNASE B still elevated, but are coming down with each blood test.

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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.

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Glad your son is doing better now. Is he on any kind of antibiotics after having the IVIG?

 

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.

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dear bubbasmom,

I'm glad your son is doing better! those are really good news!

How your doctor decided which abs to take? some doctors give abs for so long without changing, some change the abs after 10 days.

In the first round, when you gave your son 3 different abs, did you see your son getting better gradually or only after the last antibiotic?

What was the order of abs,do you remember?

Thanks!

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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..

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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..

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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