thinking of trying Augmentin! What is better?

[EAMom]

Thanks for the input everyone!

 

Re the Clav. Acid, maybe it's a case of "more isn't necessarily better?" (ie the amount in XR is more than enough to do the job.)

 

Thus, the time release factor (or possibly some other "mystery component"?) that make XR more effective....

[EAMom]

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.

 

How about trying a lyme doctor (like sfmom's)? I would think he wouldn't be afraid of the the long term abs. When we first were diagnosed we ran around to a few specialists (rhuematologist, neurologist) getting confirmation that long term abs were appropriate. That seemed to put our peds "fear of long term abs" to rest (or at least got her "off the hook"). An immunologsit might be another option...our immunologist said most peds are unnecessarily fearful of antibiotics.

 

Perhaps we were lucky in that our dd's presentation was dramatic (could be considered life threatening with the anorexia), so it was easier for them to justify long term antibiotics. If questioned, it was reasonable to say any risks of long term abs were outweighed by the decreased risk of full-blown PANDAS (with anorexia nervosa).

 

Maybe SFmom will chime in (or pm) you with other suggestions....she may have net-worked out to more docs than I have.

Edited July 21, 2010 by EAMom

[MomWithOCDSon]

Yes, our DS13 has fared considerably better on the XR than on regular 875 mg. Augmentin. It has also been gentler on his stomach, though I'm not sure if that's a reflection of the time-release component of the med, or the lower clavulanic acid component.

 

I truly think the time release is the answer. I'm beginning to sound like a broken record here, but because both the regular Augmentin and the XR (time release) enjoy the B-lactam traits of potentially being glutamate modulating and maybe anti-inflammatory to boot, and both have clavulanic acid which is now under study for possible antidepressant characteristics, it almost HAS to be the time-release piece of the puzzle that makes it more effective, doesn't it?

 

My decidedly-non-scientific-lame-o-mom-with-few-moments-to-spare thought process goes something like this: if the strep goes intracellular at some point (and maybe even more so for those kids like mine who've potentially suffered from PANDAS for years before being diagnosed?), and it is released as cells naturally expire over time, then isn't it advantageous to have the med in the system on a sustained basis so that it can "catch" that newly released strep? Perhaps that's why Sammy and some others have had success with long-term abx, particularly XR; you just need to continue to use it long enough to extinguish all or most of that lingering intracellular strep.

[sf_mom]

BMom, definitely try a LLD for long term antibiotics. They are very versed in the type of antibiotic used for intercellular bacteria's and accustom to treating individuals well past symptomless to ensure eradication even if that means for several years and at higher doses.

 

My girlfriend recently saw Raphael B. Stricker, M.D. in SF and he even offered IVIG if needed so she wouldn't have to travel to Chicago. It turns out my friend's son just prior to his 3 IVIG came back positive for Bartonella and Ehrlichia. He is 50 pounds and currently on 500 m.g. of Biaxin and 300 m.g. of Rifampin daily. He started on June 28th and doesn't even have a follow-up with the Dr. until Sept. 15th. Lyme treatment can be any where from 9 months to 3 years.

 

There is also Dr. Steve Harris in Redwood City and we'll be seeing him on August 9th. They are very open to helping PANDAS children and investigating further other potential co-infections.

 

You can even e-mail ILADS for a referral to find someone even closer if needed.

Edited July 21, 2010 by SF Mom

[7upMom]

My son is almost 10 years old and weighs 65 lbs, he is on Aug 875 twice a day and not progressing in getting better, but the 875 makes him just stable where he is right now. He seems to handle the 875 twice a day dose without any problem, but thats as high as we have been able to get his script for. I would LOVE to be able to try the aug 1000xr to see if it makes him get better but Dr K won't do it ): So I have to have faith he knows whats best in our situation.

[EAMom]

My decidedly-non-scientific-lame-o-mom-with-few-moments-to-spare thought process goes something like this: if the strep goes intracellular at some point (and maybe even more so for those kids like mine who've potentially suffered from PANDAS for years before being diagnosed?), and it is released as cells naturally expire over time, then isn't it advantageous to have the med in the system on a sustained basis so that it can "catch" that newly released strep? Perhaps that's why Sammy and some others have had success with long-term abx, particularly XR; you just need to continue to use it long enough to extinguish all or most of that lingering intracellular strep.

 

Makes sense to me!

[Iowadawn]

My son is almost 10 years old and weighs 65 lbs, he is on Aug 875 twice a day and not progressing in getting better, but the 875 makes him just stable where he is right now. He seems to handle the 875 twice a day dose without any problem, but thats as high as we have been able to get his script for. I would LOVE to be able to try the aug 1000xr to see if it makes him get better but Dr K won't do it ): So I have to have faith he knows whats best in our situation.

 

 

Your local friend from down the road chiming in here! Have you thought of getting a script through your local doc/nurse prac who has been sympathetic to your needs?? Keep your script for the 875. Sit down with her and state your case for giving XR a whirl. We have had to do this with Evan-right now he is on Biaxin after we stated the case for a change (a mp suspicion) back at the end of May. He is still on this. This helped halt a spiral we were headed into after our second IVIG in Apr. Dr. K has never recommended switching him back now. We asked to switch various times and he wouldn't budge. Now I just get abx through our local doc. We were all just out to see dr. k. Just a thought. Now we wonder if the Biaxin could be at least "making a dent" in potential tick-borne components in light of the IGeneX results. We see LLD Sept 22. Dawn

[KeithandElizabeth]

Dawn:

 

I believe that unlike most antibiotics, Biaxin is both bactericidal and bacteriostatic. It is great for strep, mycoplasma and lyme disease. I do not think, however, that it can be used for long term treatment, unlike some of the other antibiotics.

 

Elizabeth

[nevergiveup]

Dr L said no to aug XR for dd,(she weighs 80 lbs) to big a dose, she takes augmentin 875. Too much clav acid, causes her anxiety to increase. Have u read post on Clav acid and new drug in phase two for depression and being considered for Parkinsins. Study showed reverse U shape graph for dosage and efficacy. So too much clav acid doesn't help regulate dopamine and seratonin. But the right dose does. Anyway, my thought is that is why XR works best, cuz clav acid is right amount to regulate dopamine not over produce it. Check out data on drug at pharmaceutical web site. Maybe the clav acid, and ssri saving sammy took plus the amox. minimized symptoms by regulating dopamine and seratonin and also prevented strep reinfection?

[EAMom]

Dr L said no to aug XR for dd,(she weighs 80 lbs) to big a dose, she takes augmentin 875.

 

1 tablet Augmentin XR: has 1000mg Amoxicillin (extended release) and 62.5mg Clav. Acid (NOTE: the adult dose is 2 tablets twice a day)

1 tablet Augmentin 875mg: has 875 mg Amoxicillin and 125mg Clav. Acid

 

So, I'm confused...is Dr. Latimer saying the extra 125mg of Amoxcillin (in XR vs. reg.) is too much for an 80 pounder? That doesn't seem like too much of a difference (esp. since XR has 1/2 the amount of Clav. acid).

 

Plus, the ADULT dose of XR is 2 tablets 2x a day...so we would in effect be giving 1/2 the adult dose....which makes sense, since our a kid in a 60 or 80 pound kid is roughly 1/2 the size of an adult.

Edited August 31, 2010 by EAMom

[nevergiveup]

Ok. I think I confused u with my response. My dd recently switched from zith, been on it over a year and Murphy told me augmentin definately helps with tics(still unpublished study) so since my dd still has residual tics thought switching this July made sense. So tried for Aug xr and latimer said NO, too high a dose for weight, must be the amox amount becuz Clav acid is very low in XR. So started dd on Aug 875, she had MORE tics and racing heart. Couldn't understand this but started investigating the differences between XR and regular augmentin. Mostly the clav acid, and recently there was a thread on new clav acid drug being used to help depression and parkinsons. Phase two study showed too much clav acid was not good, too little also. Sooo.... In theory if clav acid regulates dopamine and seratonin, then the right amount may help tics, too much may cause other side effects. My dd has anti dopamine antibodies elevated so I am thinking dopamine is one of her issues. I have tried augmentin on my child many times in her life and every time she gets hyper. But my theory is that the right amount of clav acid could help dopamine and serotonin, the wrong amount, like any drug that alters serotonin and dopamine too much, could create side effects and increase symptoms. The other interesting note from the phase two study was that they thought the clav acid drug had some neural protection to prevent damage. Anyway, I just find it interesting that amoxicillin alone doesn't seem to be the drug of choice for pandas, but augmentin XR works the best and has lower doses of clav acid combined with amox. I am not sure the same success rate is seen in plain augmentin, maybe cuz it has too much clav acid? Hope I made sense this time. Everyone on this forum is concentrating on the augmentin killing the intracellular strep, I wonder if after the autoimmune reaction is triggered altering dopamine in brain, that the clav acid helps regulate the dopamine, and the amox prevents future strep infections. Rather than assuming the infection is still present, minimizing dopamine disregulation while the autoimmune disease goes into remission. Extended release amox then prevents future infection and a future autoimmune reaction triggered by exposure to strep. Now what about Augmentin ES, how much clav acid is in this?

Dr L said no to aug XR for dd,(she weighs 80 lbs) to big a dose, she takes augmentin 875.

 

1 tablet Augmentin XR: has 1000mg Amoxicillin (extended release) and 62.5mg Clav. Acid (NOTE: the adult dose is 2 tablets twice a day)

1 tablet Augmentin 875mg: has 875 mg Amoxicillin and 125mg Clav. Acid

 

So, I'm confused...is Dr. Latimer saying the extra 125mg of Amoxcillin (in XR vs. reg.) is too much for an 80 pounder? That doesn't seem like too much of a difference (esp. since XR has 1/2 the amount of Clav. acid).

 

Plus, the ADULT dose of XR is 2 tablets 2x a day...so we would in effect be giving 1/2 the adult dose....which makes sense, since our a kid in a 60 or 80 pound kid is roughly 1/2 the size of an adult.

[Fixit]

Ok. I think I confused u with my response. My dd recently switched from zith, been on it over a year and Murphy told me augmentin definately helps with tics(still unpublished study) so since my dd still has residual tics thought switching this July made sense. So tried for Aug xr and latimer said NO, too high a dose for weight, must be the amox amount becuz Clav acid is very low in XR. So started dd on Aug 875, she had MORE tics and racing heart. Couldn't understand this but started investigating the differences between XR and regular augmentin. Mostly the clav acid, and recently there was a thread on new clav acid drug being used to help depression and parkinsons. Phase two study showed too much clav acid was not good, too little also. Sooo.... In theory if clav acid regulates dopamine and seratonin, then the right amount may help tics, too much may cause other side effects. My dd has anti dopamine antibodies elevated so I am thinking dopamine is one of her issues. I have tried augmentin on my child many times in her life and every time she gets hyper. But my theory is that the right amount of clav acid could help dopamine and serotonin, the wrong amount, like any drug that alters serotonin and dopamine too much, could create side effects and increase symptoms. The other interesting note from the phase two study was that they thought the clav acid drug had some neural protection to prevent damage. Anyway, I just find it interesting that amoxicillin alone doesn't seem to be the drug of choice for pandas, but augmentin XR works the best and has lower doses of clav acid combined with amox. I am not sure the same success rate is seen in plain augmentin, maybe cuz it has too much clav acid? Hope I made sense this time. Everyone on this forum is concentrating on the augmentin killing the intracellular strep, I wonder if after the autoimmune reaction is triggered altering dopamine in brain, that the clav acid helps regulate the dopamine, and the amox prevents future strep infections. Rather than assuming the infection is still present, minimizing dopamine disregulation while the autoimmune disease goes into remission. Extended release amox then prevents future infection and a future autoimmune reaction triggered by exposure to strep. Now what about Augmentin ES, how much clav acid is in this?

Dr L said no to aug XR for dd,(she weighs 80 lbs) to big a dose, she takes augmentin 875.

 

1 tablet Augmentin XR: has 1000mg Amoxicillin (extended release) and 62.5mg Clav. Acid (NOTE: the adult dose is 2 tablets twice a day)

1 tablet Augmentin 875mg: has 875 mg Amoxicillin and 125mg Clav. Acid

 

So, I'm confused...is Dr. Latimer saying the extra 125mg of Amoxcillin (in XR vs. reg.) is too much for an 80 pounder? That doesn't seem like too much of a difference (esp. since XR has 1/2 the amount of Clav. acid).

 

Plus, the ADULT dose of XR is 2 tablets 2x a day...so we would in effect be giving 1/2 the adult dose....which makes sense, since our a kid in a 60 or 80 pound kid is roughly 1/2 the size of an adult.

 

so well researched and explained..thanks!!!

[7upMom]

My son is almost 10 years old and weighs 65 lbs, he is on Aug 875 twice a day and not progressing in getting better, but the 875 makes him just stable where he is right now. He seems to handle the 875 twice a day dose without any problem, but thats as high as we have been able to get his script for. I would LOVE to be able to try the aug 1000xr to see if it makes him get better but Dr K won't do it ): So I have to have faith he knows whats best in our situation.

 

 

Your local friend from down the road chiming in here! Have you thought of getting a script through your local doc/nurse prac who has been sympathetic to your needs?? Keep your script for the 875. Sit down with her and state your case for giving XR a whirl. We have had to do this with Evan-right now he is on Biaxin after we stated the case for a change (a mp suspicion) back at the end of May. He is still on this. This helped halt a spiral we were headed into after our second IVIG in Apr. Dr. K has never recommended switching him back now. We asked to switch various times and he wouldn't budge. Now I just get abx through our local doc. We were all just out to see dr. k. Just a thought. Now we wonder if the Biaxin could be at least "making a dent" in potential tick-borne components in light of the IGeneX results. We see LLD Sept 22. Dawn

 

hey there, this was a concern back in July but its amazing what difference a month has made, since we ran family titers and everyone went on antibiotics , d/s took off like crazy with healing almost immediately after. So far so great, back to school with no problems and enjoying normal daily busy life- its been an amazing transformation. Some tics, but that is all that is here at this point and we are enjoying every minute of him ( : Not ready to switch anything that he is on because everything is working so great at this point. I am hoping the same for everyone else! Srry ) : did not mean to hijack your thread ) :

Edited September 1, 2010 by 7upMom

[Sylvia]

Hi, my name is Sylvia, and this is my first post here. I have two boys with autism. Nicholas is my youngest, who is 12 and I suspect has PANDAS. He has had numerous regressions over the years, and each regression is worse than the one before. He actually becomes pyschotic. Wild eyed, drunken laughter, and recently aggressive towards my husband and myself. He does strange and dangerous things when having an episode, such as putting things he can choke on in his mouth and laughing, leaning off of balconies ready to jump, the list goes on and on. He is a danger to himself and others. He has been under the care of numerous DAN docotrs for over 10 years. (I acutally own and moderate the biomdedical group in my area) So he has been tested for practically everything under the sun (usually everything is negative) and we have done many different diets and therapies. He seems to be making good improvements, then tanks.

 

At the begining of summer, his behaviors and health took a severe crash again. He has been itching himself untill he bleeds, and was covered in scabs - including his face. He started attacking us with great force, intent on doing bodily harm. He is usually so sweet and loving, this has been a nightmare. I was able to convince our DAN doctor to prescribe Amoxicillin 1000mg 2X day and Ketoconazole for yeast, even though he tested negative for Lyme and PANDAS (ASO titer was negative). He was transformed. Calm, cool anc collected. No violence, no maniacal laughter, no dangerous behaviors, and OCD and tics decreased.

My God it was easy to get used to life like that. After the 30 supply ran out, things got bad again. By the third day off the ABX/antifungal combo, the behaviors were back in full force. I was able to get his DAN to refill the meds, and he was back to the beautiful boy I know and love. This time I stopped 3 weeks into so I would have a small supply to hold me over just in case. And again, the exact same thing. By the third day off, it was terrible again.

 

What really caught my eye on this thread was Nevergiveup's take on dopamine. Nicholas was actually a very good responder to Risperdal (a dopamine blocking drug which I am very hesitant to give because of the side effects). But it really stopped a lot of the behaviors. And he has reacted negatively in the past to any supplement that is supposed to boost dopamine, such as Theanine. So I think dopamine is a definite player in all of this as well.

 

But he doesn't need any behavior meds while on an antibiotic. And while on Risperdal this summer, he tested borderline high for high blood sugar, which is a side effect of Risperdal.

 

Sorry for the long post, but I am finding this group to be very helpful and wanted to chime in!

 

Sylvia

 

 

 

Ok. I think I confused u with my response. My dd recently switched from zith, been on it over a year and Murphy told me augmentin definately helps with tics(still unpublished study) so since my dd still has residual tics thought switching this July made sense. So tried for Aug xr and latimer said NO, too high a dose for weight, must be the amox amount becuz Clav acid is very low in XR. So started dd on Aug 875, she had MORE tics and racing heart. Couldn't understand this but started investigating the differences between XR and regular augmentin. Mostly the clav acid, and recently there was a thread on new clav acid drug being used to help depression and parkinsons. Phase two study showed too much clav acid was not good, too little also. Sooo.... In theory if clav acid regulates dopamine and seratonin, then the right amount may help tics, too much may cause other side effects. My dd has anti dopamine antibodies elevated so I am thinking dopamine is one of her issues. I have tried augmentin on my child many times in her life and every time she gets hyper. But my theory is that the right amount of clav acid could help dopamine and serotonin, the wrong amount, like any drug that alters serotonin and dopamine too much, could create side effects and increase symptoms. The other interesting note from the phase two study was that they thought the clav acid drug had some neural protection to prevent damage. Anyway, I just find it interesting that amoxicillin alone doesn't seem to be the drug of choice for pandas, but augmentin XR works the best and has lower doses of clav acid combined with amox. I am not sure the same success rate is seen in plain augmentin, maybe cuz it has too much clav acid? Hope I made sense this time. Everyone on this forum is concentrating on the augmentin killing the intracellular strep, I wonder if after the autoimmune reaction is triggered altering dopamine in brain, that the clav acid helps regulate the dopamine, and the amox prevents future strep infections. Rather than assuming the infection is still present, minimizing dopamine disregulation while the autoimmune disease goes into remission. Extended release amox then prevents future infection and a future autoimmune reaction triggered by exposure to strep. Now what about Augmentin ES, how much clav acid is in this?

Dr L said no to aug XR for dd,(she weighs 80 lbs) to big a dose, she takes augmentin 875.

 

1 tablet Augmentin XR: has 1000mg Amoxicillin (extended release) and 62.5mg Clav. Acid (NOTE: the adult dose is 2 tablets twice a day)

1 tablet Augmentin 875mg: has 875 mg Amoxicillin and 125mg Clav. Acid

 

So, I'm confused...is Dr. Latimer saying the extra 125mg of Amoxcillin (in XR vs. reg.) is too much for an 80 pounder? That doesn't seem like too much of a difference (esp. since XR has 1/2 the amount of Clav. acid).

 

Plus, the ADULT dose of XR is 2 tablets 2x a day...so we would in effect be giving 1/2 the adult dose....which makes sense, since our a kid in a 60 or 80 pound kid is roughly 1/2 the size of an adult.

[T_Mom]

Great thread--(as both our kids are on Augmentin now--)

 

So...in review, "start out and see" working upwards as necessary--seems to be the conclusion I would draw. From our experience, 875mg twice a day of regular Augmentin was not sufficient, and after about a month we switched UP to Augmentin XR and saw improvement.

 

Amox. full strength DID work for our oldest d for 9 months--but she recently was switched to Augmentin XR as I tried to back off the Amox. and she backslid tremendously (thankfully summer months.)

 

Happy to report that she is (hopefully) seeing some improvement after a week of XR twice a day (125 lbs.)