Augmentin XR

[datagirl]

How long was your son on the 250mg dose before going to 500 mg of zither? How old is your son and how long do you suspect PANDAS was present before starting zither? My son is on a lower dose just over a week now and I haven't seen any improvements yet. In fact we have had an exacerbation lately.

 

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?

[Alex]

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.

 

 

I'm pretty sure that Dr K. does not veiw antibiotics as a treatment for PANDAS symptoms. I could be wrong, but I think the reason he prefers the 875 augmentin( or the 500mg or the 250mg) over the Augmentin XR at 1000mg per pill is becasue the 875 , and the other smaller doses, have twice the clavulinic acid, making it better at preventing strep reinfections. I mentioned the Saving Sammy dose to him as a PANDAS treatment and I don't think he buys it. He doesn't treat PANDAS with antibiotics, he treats PANDAS with IVIG and then prescribes antibiotics to prevent strep.

 

Just from being on this forum though, and reading Saving Sammy, it sure seems like there is no doubt that the right kind and dose of antibioitcs can greatly reduce PANDAS symptoms for some kids. Dr. Trifiletti is much more in the antibiotics as treatment camp. With Sammy, for a year or so, if they dropped the dose of Augmentin, his symptoms flared. I personally think that for those that get better results from the Augmentin XR over regular Augmentin that it is the time release aspect that makes the difference for whatever reason. The difference in Amoxicillin from one to the other isn't that great, and you actually get more clavulinic acid from the smaller dose pills, and the clavulinic acid is what makes the amoxicillin effective against certain types of bacteria. So what does that leave, just the time release aspect.

 

I know that Dr. K is of the opinion that Sammy still has PANDAS, and that his patients, after however long the recovery process is from IVIG, don't have PANDAS. I have no idea if he is right or wrong. I am pretty sure though that that is what he believes.

Edited July 8, 2010 by Alex

[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.

 

 

I'm pretty sure that Dr K. does not veiw antibiotics as a treatment for PANDAS symptoms. I could be wrong, but I think the reason he prefers the 875 augmentin( or the 500mg or the 250mg) over the Augmentin XR at 1000mg per pill is becasue the 875 , and the other smaller doses, have twice the clavulinic acid, making it better at preventing strep reinfections. I mentioned the Saving Sammy dose to him as a PANDAS treatment and I don't think he buys it. He doesn't treat PANDAS with antibiotics, he treats PANDAS with IVIG and then prescribes antibiotics to prevent strep.

 

Just from being on this forum though, and reading Saving Sammy, it sure seems like there is no doubt that the right kind and dose of antibioitcs can greatly reduce PANDAS symptoms for some kids. Dr. Trifiletti is much more in the antibiotics as treatment camp. With Sammy, for a year or so, if they dropped the dose of Augmentin, his symptoms flared. I personally think that for those that get better results from the Augmentin XR over regular Augmentin that it is the time release aspect that makes the difference for whatever reason. The difference in Amoxicillin from one to the other isn't that great, and you actually get more clavulinic acid from the smaller dose pills, and the clavulinic acid is what makes the amoxicillin effective against certain types of bacteria. So what does that leave, just the time release aspect.

 

I know that Dr. K is of the opinion that Sammy still has PANDAS, and that his patients, after however long the recovery process is from IVIG, don't have PANDAS. I have no idea if he is right or wrong. I am pretty sure though that that is what he believes.

 

 

Alex,

This was a great explanation, and helped me understand the dosing and why Dr K said what he did. Thanks

[MomWithOCDSon]

I'm pretty sure that Dr K. does not veiw antibiotics as a treatment for PANDAS symptoms. I could be wrong, but I think the reason he prefers the 875 augmentin( or the 500mg or the 250mg) over the Augmentin XR at 1000mg per pill is becasue the 875 , and the other smaller doses, have twice the clavulinic acid, making it better at preventing strep reinfections. I mentioned the Saving Sammy dose to him as a PANDAS treatment and I don't think he buys it. He doesn't treat PANDAS with antibiotics, he treats PANDAS with IVIG and then prescribes antibiotics to prevent strep.

 

Just from being on this forum though, and reading Saving Sammy, it sure seems like there is no doubt that the right kind and dose of antibioitcs can greatly reduce PANDAS symptoms for some kids. Dr. Trifiletti is much more in the antibiotics as treatment camp. With Sammy, for a year or so, if they dropped the dose of Augmentin, his symptoms flared. I personally think that for those that get better results from the Augmentin XR over regular Augmentin that it is the time release aspect that makes the difference for whatever reason. The difference in Amoxicillin from one to the other isn't that great, and you actually get more clavulinic acid from the smaller dose pills, and the clavulinic acid is what makes the amoxicillin effective against certain types of bacteria. So what does that leave, just the time release aspect.

 

I know that Dr. K is of the opinion that Sammy still has PANDAS, and that his patients, after however long the recovery process is from IVIG, don't have PANDAS. I have no idea if he is right or wrong. I am pretty sure though that that is what he believes.

 

Alex --

 

In our consultation with Dr. K., I would second your perception of his thought processes and opinions. In fact, he actually indicated that we should take our DS off of the Augmentin altogether, cold turkey -- no tapering, no nothing -- because he didn't believe it was having any impact or effect.

 

But the thing is . . . it is. We see the differences immediately when we try to taper or cease the dosage. And I think you're right about the time release aspect of the XR, too, as, despite its lower clavulanic acid component (and now they think clavulanic acid may have anti-depressant characteristics of its own), the 875 mg. dose did not have the same positive impact on our DS.

 

Trg Girl, you may be onto something with your methylation ponderings. In a similar vein, I posted something regarding this not too long ago; I'm thinking another factor with regard to B-lactam abx (like Augmentin) is its potential for glutamate modulation, which, in kids with OCD anyway (our major PANDAS behavioral manifestation), is an evolving field of interest. Below is a link to my previous post and the article itself, but first here's an excerpt:

 

Another exciting new treatment possibility is raised by a recent study revealing the unexpected finding that B-lactam antibiotics increase the expression of glutamate transporters on glia and have neuroprotective effects in a mouse model of ALS. Because of the extensive tolerability data on such compounds, they represent an exciting and unexpected group of potential antiglutamatergic agents for use in OCD and other neuropsychiatric disorders.

 

B-Lactams and Glutamatergic Response - ACN/Latitudes Forum Thread

 

I'm still up in the air regarding "ultimate treatment" protocols, and I'm hoping the IVIG trial that NIMH will head up this fall will answer some remaining questions; unfortunately, though, it means riding things out until then or taking what amounts to continued "leaps of faith" for our family.

 

Thanks to everyone at this forum for being so honest and forthcoming about their experiences; it certainly keeps one's mind running!