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thinking of trying Augmentin! What is better?


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We're thinking of trying Augmentin (reg. or XR) after being on Azith. 250mg/day for over 2 years. We had IVIG #2 in late May...we had some mood improvement, but continue to see "flashes of PANDAS" (OCD behavior, demanding behavior, irritibity, etc) and "measurement rituals". Certainly, we're not seeing as much improvement post IVIG #2 (vs. post IVIG #1). We're pretty stagnent symptom-wise...maybe a little worse in the past couple of weeks. We're certainly not in a crisis mode... dd gets along okay, has happy well-adjusted times, but also some PANDAS-y times. We'd *really* like to be closer to 100% (vs. 75%!). She also still has learning issues (spelling, handwriting, math).

 

Can folks weigh in on the pros/cons of Augmentin vs. Augmentin XR?

 

Dd is about 62 pounds (just turned 10). I'm hoping the 1000mg 2x day of Augmentin XR would be okay (not too much). We'd prefer the pills over the liquid (unless dd ends up freaking over their size).

 

Here are the differences I can figure out:

Augmentin 875mg (has 125mg Clav. acid)

Augmentin XR 1000mg (has 62.5mg Clav. acid)

 

Another post (I think Buster looked this up, I hope I am remembering this right) said the most Clav. acid you can give is 10mg/kg/day...so we can give dd up to 281mg/day. So, it looks like both meds (if given 2x daily) would be under that number.

 

Is there an advantage to giving one over the other? What have folks found to be more effective? I would think that getting slightly more Clav. acid would be a good thing. On the other hand, XR is time released, so maybe that is the "magic ingredient".

 

Also, have others used this high a dose (either reg. or XR) in a 62 pounder?

 

And a question for Peglem...I remember you posted that Augmentin plus rifampin was a good combo. Had Allie tried regular Augmentin first without as much effect?

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And a question for Peglem...I remember you posted that Augmentin plus rifampin was a good combo. Had Allie tried regular Augmentin first without as much effect?

 

Augmentin (not XR) was tried many times back in the early days when we thought it would be enough just to do a course of abx when she tested positive for strep...it was not effective, either in eradicating the strep or reducing symptoms. But, we've never been on it long term. (14 days max) It was also the abx she was on post tonsillectomy (10 days). It does, as I've mentioned before, give my daughter raging, vag-on-fire yeast problems, so we are unlikely to go on it long term ever. But, putting up with that in combo w/ the rifampin for 10-14 days is worth the results we have seen from it.(small miracle) This leads me to believe that one of the things "broken" in my daughter's immune system is the part that signals destruction of cells that have been invaded. At any rate, that pretty much sums up our experience w/ augmentin.

 

On your other question, XR vs reg, I would think the XR would be better, just because you have less "down time" with low abx levels in system.

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hijacking again, sorry, but.. peglem! You're brilliant. Your "giddy" post had me nearly in tears feeling happy for you and your daughter and now outloud guffaws at "vag-on-fire". Thanks for the katharsis :D

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hijacking again, sorry, but.. peglem! You're brilliant. Your "giddy" post had me nearly in tears feeling happy for you and your daughter and now outloud guffaws at "vag-on-fire". Thanks for the katharsis :D

Actually, I stole that from her pediatrician.

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Last year, my daughter was prescribed Augmentin for 10 days with Rifampin on days 7-10. It didn't clear her strep throat. We then moved onto 10 days of clindamycin--which finally cleared her.

 

In retrospect, my other kids took rifampin (on days 7-10 in addition to another 10 days of whatever antibiotic they were on) and it was capsules that we opened and added to yogurt and that cleared them. But my PANDAS daughter's rifampin was in liquid form, and I think there was a mix-up in the timing of when the doctor called it in...it was mixed and waiting for a few days when I picked it up, and some of the antibiotic settled and stuck to the bottom of the bottle...so in all fairness, she may have not had the same doses as my other kids.

 

I took augmentin twice, and each time I got a pretty bad yeast infection.

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As you know we've mixed up the antibiotics with great success. We went up and down on 250 m.g. to 500 m.g. Azithromycin for months and each time our son was more responsive on the higher dose. In Feb when the strep exposure were about every other week at school we decided to keep him at the higher dose. In May when his remaining symptoms seemed to plateau we rotated in Omnicef at 600 m.g. and lowered the Azithromycin to 250 m.g. and he shed 50% of his remaining symptoms within 30 days. At that time, we did notice a flair of symptoms and then sustained improvement..... so, herxing. 14 days ago, I started him on Rifampin/Omnicef combo and again within 48 hours of starting we saw a flair of his one mild tic and within 10 days it stopped. This morning we are switching him back to 250 m.g. of Azithromycin and 300 m.g. of Omnicef as a maintenance. We will be seeing Dr. Steve Harris in Redwood City, one of the leading Lyme experts in the country on August 9th. I am not positive our son has Lyme as he was only positive for one of the double bands but the Lyme protocol has definitely pushed him towards 100%. I am confident with his further direction on antibiotics we will be able to maintain our progress.

 

My recommendation would be to get some direction on antibiotics from the best of best. If something is not working, he'll be able to direct you towards something that will.... at the right dosage for the right amount of time while monitoring liver function and gallbladder, etc.

Edited by SF Mom
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There was a brief discussion on this at IOCDF between Dr K and Dr N. Buster can give you the details I leave out. Dr K speculated that the Clav acid may be the anti-inflammatory piece of the puzzle that may be doing more to keep Pandas in remission than the prophylactic component of the amox. If so, he reasoned, 875 mg/augmentin might be more beneficial than 1000mg/XR because the 875 dose has a higher % of clav acid. But Dr N spoke from the audience and wondered if the time release aspect of xr might be more beneficial than the inevitable time lapses of trying to give 2 doses/day exactly 12 hrs apart (something we struggle with esp. now that DS is sleeping late in the summer).

 

It was a toss up - an item that would warrant more consideration but no conclusions or consensus reached.

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There was a brief discussion on this at IOCDF between Dr K and Dr N. Buster can give you the details I leave out. Dr K speculated that the Clav acid may be the anti-inflammatory piece of the puzzle that may be doing more to keep Pandas in remission than the prophylactic component of the amox. If so, he reasoned, 875 mg/augmentin might be more beneficial than 1000mg/XR because the 875 dose has a higher % of clav acid. But Dr N spoke from the audience and wondered if the time release aspect of xr might be more beneficial than the inevitable time lapses of trying to give 2 doses/day exactly 12 hrs apart (something we struggle with esp. now that DS is sleeping late in the summer).

 

It was a toss up - an item that would warrant more consideration but no conclusions or consensus reached.

 

Yeah...I think dh was going more with Dr. K's line of thinking. It's all a big guess isn't it? That's why I was hoping to get some insights from parents who've tried one or the other or both...since we don't actually have real research/a study to show which one is actually more clinically effective in PANDAS kids.

 

And while I hate to agree with Dr. N...for us lazy folks that had the blessing of once a day Azith. (we even missed a dose once in a while) it be nice to not have to be as stringent about giving meds every 12 hours. I do think XR would give us a bit more flexibility.

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Hi, EAMom:

 

After all the help you and Buster have given us over the years, I wish I had a magic answer for you! I'll just share our son's experience.

 

As you know (like with your ds), the 2nd and 3rd rounds of IVIG we did with Dr. K last summer did not do much good, nothing close to the improvement we saw with the 1st round in Oct 2008. We were really desperate, and Dr. K agreed to try a "Saving Sammy" type dose of augmentin. But - initially - he only prescribed regular augmentin (not XR), 875 mg twice daily. After 2 weeks on that dose, we had seen noticeable improvement and told him so; our son commented on the difference, too. Given that result from the "trial" of 875 mg regular aug 2x / day, Dr. K then prescribed the XR, 1000 mg 2x / day, and we've been on that ever since (since Oct 2009). Our son's progress seemed to accelerate after that, with very few bumps or setbacks.

 

So we saw definite benefit on regular aug, 875 2x / day, for a 14-year-old who weighs about 110 lbs. It seemed like we saw even greater progress on the XR 1000 mg 2x /day... but that could be pure perception, because we've been on XR much longer, we were only on the regular aug at increased dose for a couple of weeks, and we were predisposed to embrace the XR because of "Saving Sammy." And of course, still can't say for sure whether the 2 rounds of IVIG last summer had a "delayed" effect that accelerated progress in combination with the XR. (I'm really hard-pressed to believe, though, that the sudden, dramatic increase in progress after starting higher-dose aug was just coincidence. Sometimes Dr. K seems to imply that this may be the case.)

 

That's what our son experienced. Both regular augmentin (higher-dose) and XR helped. Hard to say which was definitively better. But - like LLM mentions - it's a relief to know that you have more margin for error with the Extended Release if the dose timing is off.

 

P.S.: the augmentin pills are big enough to choke a horse (or at least a pony)! Hope your ds is okay with that....

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P.S.: the augmentin pills are big enough to choke a horse (or at least a pony)! Hope your ds is okay with that..

 

No kidding! Go to a compounding pharmacy and they will crush them. But this means 875 mg pills are broken into FOUR capsules each. my ds10 prefers it, he'd rather swallow capsules.

He's on 500 mg twice a day for two weeks, then once a day for six months. (He is 63 pounds)

Dr K reiterated to us the point about clav acid being possibly the key. We have not seen steady gains since beginning Augmentin but my son never seems to react much to abx. :wacko:

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We're thinking of trying Augmentin (reg. or XR) after being on Azith. 250mg/day for over 2 years. We had IVIG #2 in late May...we had some mood improvement, but continue to see "flashes of PANDAS" (OCD behavior, demanding behavior, irritibity, etc) and "measurement rituals". Certainly, we're not seeing as much improvement post IVIG #2 (vs. post IVIG #1). We're pretty stagnent symptom-wise...maybe a little worse in the past couple of weeks. We're certainly not in a crisis mode... dd gets along okay, has happy well-adjusted times, but also some PANDAS-y times. We'd *really* like to be closer to 100% (vs. 75%!). She also still has learning issues (spelling, handwriting, math).

 

Can folks weigh in on the pros/cons of Augmentin vs. Augmentin XR?

 

Dd is about 62 pounds (just turned 10). I'm hoping the 1000mg 2x day of Augmentin XR would be okay (not too much). We'd prefer the pills over the liquid (unless dd ends up freaking over their size).

 

 

Hm, EA Mom, your daughter sounds like my son in some ways. When did PANDAS hit her, do you think? Early? I think my ds got hit at age three or four even. As I said in my post below, my son's weight and age are the same as your daughter's. He had IVIG number 2 in late March after he had one last October that was too low and so disastrous. We did not get mood improvement until about a month ago. Still some OCD, major tic actions, anxiety a little less but still there. No more crisis here either. Learning issues here too, hey I like what I see of Arrowsmith (found out about it first on this forum months ago) for that sort of thing but Dr K said make sure the child is well before trying that stuff. Don't feel we are near 75 percent really. DS is EXTREMELY affectionate and loving with his family and gets along with kids, despite exasperating vocal tics. Allergies are an issue too.

As you also know, DR K now is anti Zith. But it seems to work for many. Good luck with Augmentin, keep us posted.

Michael

 

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Hi EAMom--I pm'd you as you know:) but will add this for "the record" that our experience mirrors Worried Dad's--almost to the day!

 

Younger d was really suffering (OCD/Pandas) and we tried Augmentin 875 2xs a day...saw obvious improvements...switched up to Augmentin XR 1000mg 2 xs a day and have been on it since last November 2009. Doing much better--though some symptoms when tired or stressed--overall, MUCH improved on the XR.

 

Let us know what you decide to do and the outcome!

Great thing about this forum is that we generate data continually--:)

 

Two girls on full strength antibiotics--which have been a total life saver for us--one for 19 months, the other for 8 months.

ps--Worried Dad, I want that logo!

Edited by T.Mom
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My question is, who are the doctors willing to prescribe these doses long periods? Dr. K did not for our son. He did prescribe for 2 months the 875 mg twice daily which was great. My son was doing well. Then after 2 months he took him off of everything. Now my son after about 5 months has had the worst problems yet. His local doctor prescribed Augmentin at 500 mg twice a day, but things are still pretty bumpy and we are looking at doing IVIG #2 here locally. I would also like to do the higher Augmentin again, but out of luck on doctors that will prescribe that high of dose, long term. It has been a year and a half since we saw Dr. K so he will not prescribe anything.

Edited by bmom
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MomWithOCDSon is another one whose child has a signifcant reduction in PANDAS symptoms on AugmentinXR but not on regular Augmentin. She posted about it a few weeks ago. It's been a while since I read 'Saving Sammy' but as I recall it was the same thing, Augmentin XR was the key. Even the almost as high dose of two 875mg regular Augmentin didn't cut it. Love her or not, Beth Maloney kept highly detailed records of her son's recovery. Every time she tried reducing the dose for a year or so, PANDAS sympoms resurfaced.

 

So the big question is what is it about the XR that the regular Augmentin doesn't have? It can't be the clavulanic acid becase at the dose these kids are getting they receive half as much clav as they do from regular Augmentin. Is it the extra amoxicillin? Personally I dobut it becasue the difference from two 875mg Augmentin to two XR is only 250 mg of amoxicllin over the course of day. I doubt that is enough to make such a drastic difference for these kids between the two. What does that leave? Just the extended release aspect. And the extended release portion is all amoxicillin. The part with the clav acid is immediate release.

 

My son had a second IVIG about 7 weeks ago. He was doing great until about the three week point when things started going down hill. We kept him on azith for a few more weeks without getting back any of the initial progress. I convinced our pediatrician to mix up the antibiotcs for a week or so before we went to see Dr. B for a followup and to see what is going on. The antibioitc I got her to prescribe is called Moxatag. It is a time release Amoxicillin with a very good blood plasma concentration profile. It stays in the blood at pretty high level for 12 hours. My son is taking two a day spaced 12 hours plus one 250 mg augmentin. My reasoning for asking to try this was that if the time release aspect is the key, the moxatag is great for this(better then the XR if I'm reading the info right). The small augmentin is thrown in to keep the clav acid in the mix. The two moxatags plus the one augmentin is giving him the same clav acid and a little less amoxicillin then two XR would give. It's been 6 days. He's improved some but nothing drastic. I'll keep you posted but we have pretty much decided that some ongoing tooth issues are what caused the setback and until those are fixed I don't think anything is going to work.

 

Here is the link to the prescribing info on moxatag. http://www.moxatag.com/Portals/0/docs/Moxatag_PI.pdf The second page shows the graph of blood plasma levels if anyone is interested (Buster)

Edited by Alex
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