Augmentin XR

[MomWithOCDSon]

Like many other families here, our DS is taking Augmentin XR, the time-release form of Augmentin: 1,000 mg., twice daily. He was on it initially for over 5 months, and then we began to try and take him down slowly to a lower dosage.

 

Long story short, after 2 weeks of slowly cutting the dosage back and landing at 500 mg. of regular Augmentin twice daily (for 1,000 mg. daily total, but not XR - time release), we went for another 2 weeks at this level before we contacted the doctor and returned to the twice daily XR. DS13's behaviors began to resurface -- not with the intensity or aggressiveness they had before the initial 5 months of XR, but in a significant way nonetheless. He became increasingly concerned about contamination issues, he began having trouble getting through his homework again, and he started falling asleep in class without much preamble and without being able to wake himself (the teacher was having to awaken him).

 

After only two days back on the XR, the changes are once again miraculous. He's staying awake in class. He's doing his homework without meltdowns. He's not getting "stuck" in tasks because of concern that something or someone is in some way contaminated.

 

What's going on?!?! DS was not on such a low dose of abx in the "cutback phase" that the mere dosage level should've made such a difference, especially if he wasn't re-exposed, which we don't believe he was. So what makes the XR so powerful for him? I understand there's a lower clauvanic acid component in XR than there is in regular Augmentin; is that the difference? Is it that the "time release" provides more durable response to the strep antibodies?

 

Can anybody give me the layman's answer to the science here?

 

Thanks!

[simplygina]

Like many other families here, our DS is taking Augmentin XR, the time-release form of Augmentin: 1,000 mg., twice daily. He was on it initially for over 5 months, and then we began to try and take him down slowly to a lower dosage.

 

Long story short, after 2 weeks of slowly cutting the dosage back and landing at 500 mg. of regular Augmentin twice daily (for 1,000 mg. daily total, but not XR - time release), we went for another 2 weeks at this level before we contacted the doctor and returned to the twice daily XR. DS13's behaviors began to resurface -- not with the intensity or aggressiveness they had before the initial 5 months of XR, but in a significant way nonetheless. He became increasingly concerned about contamination issues, he began having trouble getting through his homework again, and he started falling asleep in class without much preamble and without being able to wake himself (the teacher was having to awaken him).

 

After only two days back on the XR, the changes are once again miraculous. He's staying awake in class. He's doing his homework without meltdowns. He's not getting "stuck" in tasks because of concern that something or someone is in some way contaminated.

 

What's going on?!?! DS was not on such a low dose of abx in the "cutback phase" that the mere dosage level should've made such a difference, especially if he wasn't re-exposed, which we don't believe he was. So what makes the XR so powerful for him? I understand there's a lower clauvanic acid component in XR than there is in regular Augmentin; is that the difference? Is it that the "time release" provides more durable response to the strep antibodies?

 

Can anybody give me the layman's answer to the science here?

 

Thanks!

 

I thought I read somewhere (maybe in Saving Sammy?) that the higher dose was thought to have an anti-inflammatory effect.

[sf_mom]

We've experienced similar BUT our son is on Azithromycin. For some reason, the change from 250 m.g. to 500 m.g. is hugh in his ability to progress towards full recovery. I have been debating the topic with friends recently... Is it a slow growing bacteria that still needs eradication, or does it keep the nasty cross reactive antibodies from rising, or is it anti-inflammatory, or is it the COMBO.

 

Because we are experience similar, as well as others... I tend to believe its the dose amount and not type of antibiotic that makes the difference.

 

BUSTER, any thoughts?

[MomWithOCDSon]

I thought I read somewhere (maybe in Saving Sammy?) that the higher dose was thought to have an anti-inflammatory effect.

I remember "hearing" that, too, but I can't turn up any actual research to support that hypothesis. You would've thought that with other illnesses for which the drug appears to be a popular response (I see a LOT of uses of it related to sinus infections, for instance), the "anti-inflammatory" properties would have been noted, if not heralded.

 

I'd love a point to some scholarly or quasi-scholarly reasoning/research to share with our doctor. I'm always living on the edge, concerned that eventually our purely "anecdotal" evidence as to DS needing this particular drug, at this particular dosage, is going to wear thin.

[MomWithOCDSon]

Because we are experience similar, as well as others... I tend to believe its the dose amount and not type of antibiotic that makes the difference.

 

BUSTER, any thoughts?

That makes sense. Also, since there are different strep strains to confront, maybe each of these drugs has an equally strong correlating affect, depending upon the strain.

 

Also, if I recall correctly, though, Azith has a longer half-life than most of the other non-time-release antibiotics, doesn't it? So maybe it IS something about the duration of the drug itself in the system (Azith = long half life and XR = time release), in addition to or beyond the actual dosage?

 

Yes, please, Buster?

[Worried_Dad]

I believe that EAMom's / Buster's daughter's immunologist at Stanford told them that zithro is immune-modulating and anti-inflammatory at sufficient dosage. Diana P told me that she discussed the high-dose augmentin XR effect at a recent meeting she had with some of the "PANDAS heavy-hitters" (Swedo, Grant, Leckman, Cunningham) - they also seemed to believe there was an immune-modulating / anti-inflammatory factor at work there.

 

I think somebody on this forum also posted that the PANDAS researchers at NIMH told them that augmentin / amoxil had these benefits, but they didn't cite specific research / publications. Sigh.... Hearsay doesn't cut it with skeptical local docs, does it?

 

 

I thought I read somewhere (maybe in Saving Sammy?) that the higher dose was thought to have an anti-inflammatory effect.

I remember "hearing" that, too, but I can't turn up any actual research to support that hypothesis. You would've thought that with other illnesses for which the drug appears to be a popular response (I see a LOT of uses of it related to sinus infections, for instance), the "anti-inflammatory" properties would have been noted, if not heralded.

 

I'd love a point to some scholarly or quasi-scholarly reasoning/research to share with our doctor. I'm always living on the edge, concerned that eventually our purely "anecdotal" evidence as to DS needing this particular drug, at this particular dosage, is going to wear thin.

[Fixit]

I like the responses everyone has given so far......

Since i saw a marked improvement on aug xr but had the reaction..then 3-5 days later doc t started the 5 day zpack...500mb with 250 remaing days.....

there was backsliding.....do you think that the zith wasn' high and long enough....

 

a/o today i would say we are back to were we started and maybe a couple of the motor tics may have been switched for the F)(*(*&*&^^^ vocals..

 

is it possible the vocals are do to yeast overgrowth.......HIGH pitched squeal.....and as of the last couple of days i notice a grunt that sounds like someone lifting weights(short and abbrupt) and kinda pissed sounding......LIke Aurgh!..,,,you son of a......

[peglem]

do you think that the zith wasn' high and long enough....

 

That's what I think.

 

After a couple of years of low dose prophylaxis (mostly zith) and us thinking this is as good as it gets...we were hit with an exacerbation last October. (strep + in Sept). We'd just made the pediatrician aware of the Cunningham results and provided the research and phone#. Things were bad...Talked the pediatrician into getting more aggressive w/ abx. He was afraid of damaging her liver, and I appreciated his concern...so he talked with some specialists and they told him higher doses would probably be safe. Still, even treatment doses of different abxs did not give us improved symptoms. What made a huge huge difference (we've never seen improvement this good) was 10 days of rifampin + full dose augmentin. When that was done, we continued the augmentin as zith was added back (at a higher dose) then dumped the augmentin (she gets stomach problems with it) and continued with the higher dose of zith. Things have been very good, mostly, since then.

[gbobsmom]

I thought I read somewhere (maybe in Saving Sammy?) that the higher dose was thought to have an anti-inflammatory effect.

I remember "hearing" that, too, but I can't turn up any actual research to support that hypothesis. You would've thought that with other illnesses for which the drug appears to be a popular response (I see a LOT of uses of it related to sinus infections, for instance), the "anti-inflammatory" properties would have been noted, if not heralded.

 

I'd love a point to some scholarly or quasi-scholarly reasoning/research to share with our doctor. I'm always living on the edge, concerned that eventually our purely "anecdotal" evidence as to DS needing this particular drug, at this particular dosage, is going to wear thin.

 

 

My sons autism doctor wanted him on this (AUGMENTION liquid) for PANDAS but the antibiotics wreck havoc on his intestines... anyone else have to worry about this... and "yeast/candida" issues?

Edited July 7, 2010 by gbobsmom

[gbobsmom]

I thought I read somewhere (maybe in Saving Sammy?) that the higher dose was thought to have an anti-inflammatory effect.

I remember "hearing" that, too, but I can't turn up any actual research to support that hypothesis. You would've thought that with other illnesses for which the drug appears to be a popular response (I see a LOT of uses of it related to sinus infections, for instance), the "anti-inflammatory" properties would have been noted, if not heralded.

 

I'd love a point to some scholarly or quasi-scholarly reasoning/research to share with our doctor. I'm always living on the edge, concerned that eventually our purely "anecdotal" evidence as to DS needing this particular drug, at this particular dosage, is going to wear thin.

 

 

My sons autism doctor wanted him on this AUGMENTION liquid for PANDAS but the antibiotics wreck havoc on his intestines... anyone else have to worry about this... and "yeast/candida" issues?

[fuelforall]

SFMom FYI, (and you too Peglem)

 

Dr K wants my son OFF zithromax. He doesn't think it does the job long term post IVIG.

"It's not a good maintenance drug and I have my doubts it should be used."

 

So we're off to Augmentin for a while, per his suggestion. I've had sort of MEH response from Zith anyway so I don't mind. Glad it works for your children, SF Mom and Peglem!

 

Michael

[Fixit]

I thought I read somewhere (maybe in Saving Sammy?) that the higher dose was thought to have an anti-inflammatory effect.

I remember "hearing" that, too, but I can't turn up any actual research to support that hypothesis. You would've thought that with other illnesses for which the drug appears to be a popular response (I see a LOT of uses of it related to sinus infections, for instance), the "anti-inflammatory" properties would have been noted, if not heralded.

 

I'd love a point to some scholarly or quasi-scholarly reasoning/research to share with our doctor. I'm always living on the edge, concerned that eventually our purely "anecdotal" evidence as to DS needing this particular drug, at this particular dosage, is going to wear thin.

 

 

My sons autism doctor wanted him on this AUGMENTION liquid for PANDAS but the antibiotics wreck havoc on his intestines... anyone else have to worry about this... and "yeast/candida" issues?

 

my son needs to be on diflucan when he is on aug.....w/o it..it wipes out everything...lets yeast and fungi over grow and gives ds joint.muslce pain....with diflucante he was on it a month and not problems

[trggirl]

Ok, I'm just going to throw this out there. Probably not correct at all, but I am digging for all possibilities.

 

According to studies, CamKinase II stimulates Norepinephrine. I have also seen in research that "tourettes (ticcy) kids" have high Norepinephrine. My daughter has high Norepinephrine. To metabolize Norepinephrine, you need methionine/ SAMe because they donate a methyl group. So...........

 

 

Norepi---------Methyl added to Norepi by Methionine/SAMe----------Norepi metabolized

 

If you look at the structure of Augmentin and Azithromycin, they both have methyl groups.

 

What if it is the methyl groups from the antibiotics that are attaching to the NE and bringing the NE down in the body?? Maybe the NE is too high in the body due to the high CamK and the methionine and SAMe just can't handle it. And the result is high NE which results in anxiety, hyperness, "fight or flight", etc. If you add Augmentin or Zith, presto..... methyls are added......kids calm down. Just some thoughts in my head...

 

This definitely goes back to the overmethylation/undermethylation theory, but my daughter never fit into either catagories exactly.

 

 

Edited to add:

 

Methionine plus cysteine make taurine. If the methionine is low due to being used on all the Norepinephrine in the body, then taurine would be low. Maybe that is why taurine is helping so many kids on this board.

 

Methionine is also a precursor to Cysteine. Again, if methionine is low, maybe cysteine is not being made like it should. Maybe that is why NAC helps so many kids on this board.

Edited July 8, 2010 by Trg girl

[7upMom]

SFMom FYI, (and you too Peglem)

 

Dr K wants my son OFF zithromax. He doesn't think it does the job long term post IVIG.

"It's not a good maintenance drug and I have my doubts it should be used."

 

So we're off to Augmentin for a while, per his suggestion. I've had sort of MEH response from Zith anyway so I don't mind. Glad it works for your children, SF Mom and Peglem!

 

Michael

 

Dr K told me in an email "875 augmentin is more effecive in pandas than 1000 xr "

Any thoughts on this? I had always thought, the 1000xr was to be the best- never tried it, but just heard it got better results??

I do know we are on 875 twice a day and when we added the zithro 250 zpack for 5 days, we had a lot of behaviors disappear and within 36 hrs of being off he dipped down again and is still stuck there.

[Megs_Mom]

There are a bunch of studies about different abx's having immune modulating & anti-inflamatory effects. They are not specifically for PANDAS, but are generally for other auto-immune illnesses. Here is one line I keep handy: http://jac.oxfordjournals.org/cgi/content/abstract/55/1/10.

 

I am a "lover" of azith, so that is where most of my files are at this point. We get a decent effect from a lower dose, but are playing with what she really needs now. High doses give us "perfection" - lower dose allows breakthrough. Trying to find the right balance now. I really think it is the immune or inflamatory condition, and am not sure what that says about her overall health. But one worry at a time....