Moxatag

[Kayanne]

I pulled this quote from Alex from another thread. I thought it was an important bit of info that needed a new topic. I checked out the website, it may be another tool to add to the PANDAS arsenal.

 

"I was doing some googling the other day and came acoss a new time release amoxicillin called MOXATAG, which other then Augmentin XR is the only time release amox. The pill is prescribed as a once a day for Strep at 775mg per dose. I have long wondered if the reason that Augmentin XR and Azithromyicn seem to be the most effective antibioitcs for PANDAS is entirely due to the fact that they are the ones that remain in the blood the longest. Azith has a very long half life, 68 hours or something, and XR is extended release. Regular amox, penicillin, and other macrolides peak pretty quickly and then dissapate rapidly. For my son, we feel strongly that he is in an ongoing battle with strep. Anytime he has no antibiotic in his system, seems to me, that his immune system would have to take over and create the dreaded antibodies.

 

I think it might be worth a try to give this new medicine a shot. For what it is worth, clavulinic acid doesn't really play any role in fighting strep. What it does is prevent other non GABHS bacteria from producing an enzyme called Beta Lactamase , making those bacteria susceptible to penicillin class drugs when they normally wouldn't be. GABHS has no resistance of it's own to penicillin/ amoxicllin. There's more to it but that is the gist.

 

To help make my case I'll point out that Augmentin XR, the way our kids are taking it, has half the clavulinic acid of regular Augmentin, but seemingly works better for PANDAS, indicating that it is not the clav acid in the XR that is doing the trick. The extended release portion of the XR is straight amox.

 

This new medicine is prescribed as a once a day but looking at the literature, it is completely gone from the blood PLASMA after 16 hours or so and at a prettly low level after 12. Two pills a day would guarantee constant coverage and still result in less total amoxiciilin, 1500mg per day, then the two Augmentin XR's kids are taking, and have none of the Clav acid, which can be pretty hard on the body. The website says the medicine is for people 12 years and older, but Augmentin XR is supposedly not for kids either. I am tempted to ask for it at our next appt. Here is the link. if anyone is interested. www.moxatag.com/

 

Alex"

 

Thanks for the info, Alex!

[momaine]

This is a very timely post for me. Thanks Alex. Our insurance does not cover the Augmentin XR anymore, but does cover Moxatag. I've written to Dr. T to see if he feels this would be a good replacement.

 

I'll let you know what I hear.

 

Angela

 

I pulled this quote from Alex from another thread. I thought it was an important bit of info that needed a new topic. I checked out the website, it may be another tool to add to the PANDAS arsenal.

 

"I was doing some googling the other day and came acoss a new time release amoxicillin called MOXATAG, which other then Augmentin XR is the only time release amox. The pill is prescribed as a once a day for Strep at 775mg per dose. I have long wondered if the reason that Augmentin XR and Azithromyicn seem to be the most effective antibioitcs for PANDAS is entirely due to the fact that they are the ones that remain in the blood the longest. Azith has a very long half life, 68 hours or something, and XR is extended release. Regular amox, penicillin, and other macrolides peak pretty quickly and then dissapate rapidly. For my son, we feel strongly that he is in an ongoing battle with strep. Anytime he has no antibiotic in his system, seems to me, that his immune system would have to take over and create the dreaded antibodies.

 

I think it might be worth a try to give this new medicine a shot. For what it is worth, clavulinic acid doesn't really play any role in fighting strep. What it does is prevent other non GABHS bacteria from producing an enzyme called Beta Lactamase , making those bacteria susceptible to penicillin class drugs when they normally wouldn't be. GABHS has no resistance of it's own to penicillin/ amoxicllin. There's more to it but that is the gist.

 

To help make my case I'll point out that Augmentin XR, the way our kids are taking it, has half the clavulinic acid of regular Augmentin, but seemingly works better for PANDAS, indicating that it is not the clav acid in the XR that is doing the trick. The extended release portion of the XR is straight amox.

 

This new medicine is prescribed as a once a day but looking at the literature, it is completely gone from the blood PLASMA after 16 hours or so and at a prettly low level after 12. Two pills a day would guarantee constant coverage and still result in less total amoxiciilin, 1500mg per day, then the two Augmentin XR's kids are taking, and have none of the Clav acid, which can be pretty hard on the body. The website says the medicine is for people 12 years and older, but Augmentin XR is supposedly not for kids either. I am tempted to ask for it at our next appt. Here is the link. if anyone is interested. www.moxatag.com/

 

Alex"

 

Thanks for the info, Alex!

[Alex]

Hi Angela,

 

So sorry you are having problems with the insurance company and so frustrating. Not to cloud the issue further, but I just got off the phone with Dr. K and along with saying that there is no PANDAS cure without IVIG, he said that he believes highly in regular Augmentin over XR exactly because of the Clavulinic acid. He is in the process of investigating if the clav acid is antiinflammatory. He also talked about beta-lactamase needing to be inhibited, even if it is not coming from the strep.

 

We went back and forth on whether or not Sammy from 'Saving Sammy' is cured or not. He seems to think that Sammy actually still has PANDAS symptoms and that he just hides them or has learned to deal with them. On this one I am going to have to go with Beth Maloney and with her son, who was debilitated with OCD and TICS, and went on to excel in high school and is seemingly a well adjusted, happy, successful college student. And for Sammy, XR was the magic bullet. So who knows. With that said, I think the MOXATAG is worth a try and good luck getting it. I think there is some sort of voucher you can get to keep the cost down. If not, according to Dr. K. at least, regular Augmentin is a good choice. But, he would certainly say don't expect a cure from it.

 

Also, from Dr. K and Diana Pohlman and LLM who posts on here, theses PANDAS docs are finally getting together to work out a standard treatment, and according to Dr K it is going to be his protocol that is adopted. He told me he has treated 500 PANDAS patients at this point.

 

PM me if you want to talk. Alex

 

This is a very timely post for me. Thanks Alex. Our insurance does not cover the Augmentin XR anymore, but does cover Moxatag. I've written to Dr. T to see if he feels this would be a good replacement.

 

I'll let you know what I hear.

 

Angela

 

I pulled this quote from Alex from another thread. I thought it was an important bit of info that needed a new topic. I checked out the website, it may be another tool to add to the PANDAS arsenal.

 

"I was doing some googling the other day and came acoss a new time release amoxicillin called MOXATAG, which other then Augmentin XR is the only time release amox. The pill is prescribed as a once a day for Strep at 775mg per dose. I have long wondered if the reason that Augmentin XR and Azithromyicn seem to be the most effective antibioitcs for PANDAS is entirely due to the fact that they are the ones that remain in the blood the longest. Azith has a very long half life, 68 hours or something, and XR is extended release. Regular amox, penicillin, and other macrolides peak pretty quickly and then dissapate rapidly. For my son, we feel strongly that he is in an ongoing battle with strep. Anytime he has no antibiotic in his system, seems to me, that his immune system would have to take over and create the dreaded antibodies.

 

I think it might be worth a try to give this new medicine a shot. For what it is worth, clavulinic acid doesn't really play any role in fighting strep. What it does is prevent other non GABHS bacteria from producing an enzyme called Beta Lactamase , making those bacteria susceptible to penicillin class drugs when they normally wouldn't be. GABHS has no resistance of it's own to penicillin/ amoxicllin. There's more to it but that is the gist.

 

To help make my case I'll point out that Augmentin XR, the way our kids are taking it, has half the clavulinic acid of regular Augmentin, but seemingly works better for PANDAS, indicating that it is not the clav acid in the XR that is doing the trick. The extended release portion of the XR is straight amox.

 

This new medicine is prescribed as a once a day but looking at the literature, it is completely gone from the blood PLASMA after 16 hours or so and at a prettly low level after 12. Two pills a day would guarantee constant coverage and still result in less total amoxiciilin, 1500mg per day, then the two Augmentin XR's kids are taking, and have none of the Clav acid, which can be pretty hard on the body. The website says the medicine is for people 12 years and older, but Augmentin XR is supposedly not for kids either. I am tempted to ask for it at our next appt. Here is the link. if anyone is interested. www.moxatag.com/

 

Alex"

 

Thanks for the info, Alex!

[momaine]

Alex,

Thanks for that info. I'll be interested in Dr. T's take on the matter. One question....would IVIG be advisable if immune system tests came back normal? Obviously, something is wrong with these kids but my dd's immune system tests were normal and she doesn't get sick easily. She's never tested positive for strep becasue we didn't know to test for it. She had many symptoms of vaginal strep (in hindsight) over the last 3 years though. I'd say we don't know for certain what is causing her problems but she's having a positive reaction to antibiotics and anti-inflammitories.

 

Angela

 

 

Hi Angela,

 

So sorry you are having problems with the insurance company and so frustrating. Not to cloud the issue further, but I just got off the phone with Dr. K and along with saying that there is no PANDAS cure without IVIG, he said that he believes highly in regular Augmentin over XR exactly because of the Clavulinic acid. He is in the process of investigating if the clav acid is antiinflammatory. He also talked about beta-lactamase needing to be inhibited, even if it is not coming from the strep.

 

We went back and forth on whether or not Sammy from 'Saving Sammy' is cured or not. He seems to think that Sammy actually still has PANDAS symptoms and that he just hides them or has learned to deal with them. On this one I am going to have to go with Beth Maloney and with her son, who was debilitated with OCD and TICS, and went on to excel in high school and is seemingly a well adjusted, happy, successful college student. And for Sammy, XR was the magic bullet. So who knows. With that said, I think the MOXATAG is worth a try and good luck getting it. I think there is some sort of voucher you can get to keep the cost down. If not, according to Dr. K. at least, regular Augmentin is a good choice. But, he would certainly say don't expect a cure from it.

 

Also, from Dr. K and Diana Pohlman and LLM who posts on here, theses PANDAS docs are finally getting together to work out a standard treatment, and according to Dr K it is going to be his protocol that is adopted. He told me he has treated 500 PANDAS patients at this point.

 

PM me if you want to talk. Alex

 

This is a very timely post for me. Thanks Alex. Our insurance does not cover the Augmentin XR anymore, but does cover Moxatag. I've written to Dr. T to see if he feels this would be a good replacement.

 

I'll let you know what I hear.

 

Angela

 

I pulled this quote from Alex from another thread. I thought it was an important bit of info that needed a new topic. I checked out the website, it may be another tool to add to the PANDAS arsenal.

 

"I was doing some googling the other day and came acoss a new time release amoxicillin called MOXATAG, which other then Augmentin XR is the only time release amox. The pill is prescribed as a once a day for Strep at 775mg per dose. I have long wondered if the reason that Augmentin XR and Azithromyicn seem to be the most effective antibioitcs for PANDAS is entirely due to the fact that they are the ones that remain in the blood the longest. Azith has a very long half life, 68 hours or something, and XR is extended release. Regular amox, penicillin, and other macrolides peak pretty quickly and then dissapate rapidly. For my son, we feel strongly that he is in an ongoing battle with strep. Anytime he has no antibiotic in his system, seems to me, that his immune system would have to take over and create the dreaded antibodies.

 

I think it might be worth a try to give this new medicine a shot. For what it is worth, clavulinic acid doesn't really play any role in fighting strep. What it does is prevent other non GABHS bacteria from producing an enzyme called Beta Lactamase , making those bacteria susceptible to penicillin class drugs when they normally wouldn't be. GABHS has no resistance of it's own to penicillin/ amoxicllin. There's more to it but that is the gist.

 

To help make my case I'll point out that Augmentin XR, the way our kids are taking it, has half the clavulinic acid of regular Augmentin, but seemingly works better for PANDAS, indicating that it is not the clav acid in the XR that is doing the trick. The extended release portion of the XR is straight amox.

 

This new medicine is prescribed as a once a day but looking at the literature, it is completely gone from the blood PLASMA after 16 hours or so and at a prettly low level after 12. Two pills a day would guarantee constant coverage and still result in less total amoxiciilin, 1500mg per day, then the two Augmentin XR's kids are taking, and have none of the Clav acid, which can be pretty hard on the body. The website says the medicine is for people 12 years and older, but Augmentin XR is supposedly not for kids either. I am tempted to ask for it at our next appt. Here is the link. if anyone is interested. www.moxatag.com/

 

Alex"

 

Thanks for the info, Alex!

[P_Mom]

Angela....Are you working with Dr.T? What does he have your daughter on and what is the plan?

[Alex]

Angela,

Talking to Dr. K I briefly got his theory of why IVIG. He says it is necessary to halt the autoimmune process that is causing PANDAS. He does 1.5 g/kg because it is enough donor antibodies to shut down the bodies antibody production for several weeks. When the bone marrow starts making antibodies again, it has been rebooted and doesn't make the bad ones anymore. So there doesn't need to be an immune deficiency to make it necessary. I listened to Dr. K's interview on the Autism 1 program. The link is on the forum here somewhere, I'll repost it later. In it he talks about how the initiial strep infection could have been years ago, long enough for titers to go back to normal. Then, the autoimmune process is kicked in to high gear by something else, flu or whatever(Also, from Buster's posts, ASO doesn't always rise even with a recent infection) The radio program was very informative if you get a chance to listen. I'd like to get Dr. T's opinion as well since I think he believes you can cure PANDAS with antibioitcs and believes he has done it. Ugh! I wish there was some clear cut answer. I'll post my notes from the phone consult with Dr. T in a separate thread later. Alex

 

Alex,

Thanks for that info. I'll be interested in Dr. T's take on the matter. One question....would IVIG be advisable if immune system tests came back normal? Obviously, something is wrong with these kids but my dd's immune system tests were normal and she doesn't get sick easily. She's never tested positive for strep becasue we didn't know to test for it. She had many symptoms of vaginal strep (in hindsight) over the last 3 years though. I'd say we don't know for certain what is causing her problems but she's having a positive reaction to antibiotics and anti-inflammitories.

 

Angela

 

 

Hi Angela,

 

"[/i]

 

!

[Megs_Mom]

Edit - ok, it took me a few hours to get this posted while working (who me?) and I see that you have answered this. Thanks!

 

Hey Alex - can I ask about the comment from Dr. K - because that is something that I worry about a lot, and yet struggle to justify. I am referring to the "no cure without IVIG". We have clinical diagnosis of PANDAS, classic signs, but no positive ASO/strep, onset with ear infection each time, positive CamKinII, high ANA that goes down with antibiotic treatment. Almost subclinical on Pred Burst, subclinical with antibiotics (Azith). 2 Mild episode completely treated with Azith increase (one for 8 days, as I waited for 3 days, then next for only 2 days, as I treated IMMEDIATELY as the mom suspected strep coincidental to very mild uptick in compulsions). We are only 5 months in remission.

 

So, I can't see justifying IVIG when we are at 99% - and we don't qualify for insurance (at this point) as there are no underlying immunilogical challenges that we can find. And yet are we giving her the best possible chance - always the question. We are frankly very afraid of taking her off antibiotics. We are currently doing daily tracking to see if the mild episode trend is related to the amount of Azith she is taking, as I suspect it is. If so, that would seem to indicate that we are treating her with anti-inflamatories. I hesitate to post about this, as it is completely just a suspicion on my part at this point. We are debating the correct amount for her - if preventative only, then her low dose is right. If treating something, then she needs more - and then I would have a different thought process about IVIG and the investment needed. It's a hard thing to test without taking her off - I am just not willing to do that! So we are probably 3 months out from proving a point...

 

If I understand correctly, he would say that IVIG is still needed, right? Do you understand about his basis for thinking this? Thanks SO much for posting!

[faith]

I have some questions here too, but I'm afraid I'll get yelled at if I start asking.

[Alex]

Edit - ok, it took me a few hours to get this posted while working (who me?) and I see that you have answered this. Thanks!

 

Hey Alex - can I ask about the comment from Dr. K - because that is something that I worry about a lot, and yet struggle to justify. I am referring to the "no cure without IVIG". We have clinical diagnosis of PANDAS, classic signs, but no positive ASO/strep, onset with ear infection each time, positive CamKinII, high ANA that goes down with antibiotic treatment. Almost subclinical on Pred Burst, subclinical with antibiotics (Azith). 2 Mild episode completely treated with Azith increase (one for 8 days, as I waited for 3 days, then next for only 2 days, as I treated IMMEDIATELY as the mom suspected strep coincidental to very mild uptick in compulsions). We are only 5 months in remission.

 

So, I can't see justifying IVIG when we are at 99% - and we don't qualify for insurance (at this point) as there are no underlying immunilogical challenges that we can find. And yet are we giving her the best possible chance - always the question. We are frankly very afraid of taking her off antibiotics. We are currently doing daily tracking to see if the mild episode trend is related to the amount of Azith she is taking, as I suspect it is. If so, that would seem to indicate that we are treating her with anti-inflamatories. I hesitate to post about this, as it is completely just a suspicion on my part at this point. We are debating the correct amount for her - if preventative only, then her low dose is right. If treating something, then she needs more - and then I would have a different thought process about IVIG and the investment needed. It's a hard thing to test without taking her off - I am just not willing to do that! So we are probably 3 months out from proving a point...

 

If I understand correctly, he would say that IVIG is still needed, right? Do you understand about his basis for thinking this? Thanks SO much for posting!

 

Hi,

You know, I think Dr. K would say, and does say, that PANDAS kids need IVIG. The first time we consulted with him back in June I remember him telling me that in his years of treating PANDAS he has had only one child cured from antibiotics alone and that the child was in a true first onset and was treated very soon after the onset.

 

I think that Dr. K would say that the child is cured when there are no longer any symptoms, and no flares associated with illness. I don't want to put words in the man's mouth, but that is the way I understand it. I think in his opinion, Sammy is not cured because for one, if he gets strep, even to this day, he has a return of symptoms. To Dr. K that means that the underlying autoimmune condtion is still there. Also, in the phone conversation today, he basically said that he thinks Sammy still has symptoms, and just deals with them or hides them. I think Beth Maloney would take exception with that.

 

As for IVIG being a cure, and I see Faith posted that she has some questions, I think this forum is very deceiving in that what we see on here are the people whose children are having problems. So if someone's child has IVIG and still has issues, they keep posting. If they have IVIG and get better, they get on with their lives. Dr. K told me he has treated 500 or so PANDAS kids, and he treats with IVIG, and he says it is a cure. Either the man is crazy, or for the most part that is true. WorriedDad's child is obviously an exception, but from what I understand in speaking with Diana Pohlman of the fabulous PANDASnetwork website, his child's is a true exception that Dr. K says is his toughest case ever. Also, in speaking with Diana, she says that the healing process after IVIG is extended. The kids continue to have occasional flares for a year or two after IVIG, but they get less and less severe and then finally, nothing.

 

For those that think IVIG is invasive, I have to say that it is really no big deal. My son had one infusion through Dr. B and we almost had fun. He felt crummy the next day and then was back up to speed physically. PANDAS wise not so good yet, and Dr. K says it won't get good because we didn't do a high enough dose. At this point I think we are going to choose to believe the man. Going to call Dr. B tomorrow to discuss.

 

As far as IVIG being dangerous, there has never been one blood borne infection passed through IVIG in the U.S. Those are fantastic odds. Certainly the most dangerous part of my son's IVIG was the 600 miles of driving in one day with his sleep deprived dad.

 

I have been one of the ones on here pushing for Augmentin XR becasue of the Sammy story, and I still think there is something to it, especially with WorriedDad's example to add to it. With that said, I can't think of a reason not to go for a full cure.

 

Alex

[faith]

Alex,

are we talking about one IVIG? is that his stance? what about those that are starting to have to go into multiple or monthly?

[laurenjohnsonsmom]

Well said...Alex.

 

I think there is still more to learn about IVIG but for the most part, it is heading in the right direction. I can tell you that when we met with Dr. Leckman at Yale, for the first time, last November when we were looking into TS vs. PANDAS, etc..We had a daughter that was sneezing over 16,000 times a day. I remember someting that Dr. Leckman said to me that has stuck in my head to this day. While addressing diagnosis theories he said "well if it turns out to be PANDAS then we no what to do, IVIG". He was so confident in his words that they burned into my brain! I know Dr. Leckman thinks very highly of Dr. K and believes that there is good evidence to the IVIG/cure. That's why Dr. Leckman is doing the IVIG study with Dr. K's help!

 

Edit - ok, it took me a few hours to get this posted while working (who me?) and I see that you have answered this. Thanks!

 

Hey Alex - can I ask about the comment from Dr. K - because that is something that I worry about a lot, and yet struggle to justify. I am referring to the "no cure without IVIG". We have clinical diagnosis of PANDAS, classic signs, but no positive ASO/strep, onset with ear infection each time, positive CamKinII, high ANA that goes down with antibiotic treatment. Almost subclinical on Pred Burst, subclinical with antibiotics (Azith). 2 Mild episode completely treated with Azith increase (one for 8 days, as I waited for 3 days, then next for only 2 days, as I treated IMMEDIATELY as the mom suspected strep coincidental to very mild uptick in compulsions). We are only 5 months in remission.

 

So, I can't see justifying IVIG when we are at 99% - and we don't qualify for insurance (at this point) as there are no underlying immunilogical challenges that we can find. And yet are we giving her the best possible chance - always the question. We are frankly very afraid of taking her off antibiotics. We are currently doing daily tracking to see if the mild episode trend is related to the amount of Azith she is taking, as I suspect it is. If so, that would seem to indicate that we are treating her with anti-inflamatories. I hesitate to post about this, as it is completely just a suspicion on my part at this point. We are debating the correct amount for her - if preventative only, then her low dose is right. If treating something, then she needs more - and then I would have a different thought process about IVIG and the investment needed. It's a hard thing to test without taking her off - I am just not willing to do that! So we are probably 3 months out from proving a point...

 

If I understand correctly, he would say that IVIG is still needed, right? Do you understand about his basis for thinking this? Thanks SO much for posting!

 

Hi,

You know, I think Dr. K would say, and does say, that PANDAS kids need IVIG. The first time we consulted with him back in June I remember him telling me that in his years of treating PANDAS he has had only one child cured from antibiotics alone and that the child was in a true first onset and was treated very soon after the onset.

 

I think that Dr. K would say that the child is cured when there are no longer any symptoms, and no flares associated with illness. I don't want to put words in the man's mouth, but that is the way I understand it. I think in his opinion, Sammy is not cured because for one, if he gets strep, even to this day, he has a return of symptoms. To Dr. K that means that the underlying autoimmune condtion is still there. Also, in the phone conversation today, he basically said that he thinks Sammy still has symptoms, and just deals with them or hides them. I think Beth Maloney would take exception with that.

 

As for IVIG being a cure, and I see Faith posted that she has some questions, I think this forum is very deceiving in that what we see on here are the people whose children are having problems. So if someone's child has IVIG and still has issues, they keep posting. If they have IVIG and get better, they get on with their lives. Dr. K told me he has treated 500 or so PANDAS kids, and he treats with IVIG, and he says it is a cure. Either the man is crazy, or for the most part that is true. WorriedDad's child is obviously an exception, but from what I understand in speaking with Diana Pohlman of the fabulous PANDASnetwork website, his child's is a true exception that Dr. K says is his toughest case ever. Also, in speaking with Diana, she says that the healing process after IVIG is extended. The kids continue to have occasional flares for a year or two after IVIG, but they get less and less severe and then finally, nothing.

 

For those that think IVIG is invasive, I have to say that it is really no big deal. My son had one infusion through Dr. B and we almost had fun. He felt crummy the next day and then was back up to speed physically. PANDAS wise not so good yet, and Dr. K says it won't get good because we didn't do a high enough dose. At this point I think we are going to choose to believe the man. Going to call Dr. B tomorrow to discuss.

 

As far as IVIG being dangerous, there has never been one blood borne infection passed through IVIG in the U.S. Those are fantastic odds. Certainly the most dangerous part of my son's IVIG was the 600 miles of driving in one day with his sleep deprived dad.

 

I have been one of the ones on here pushing for Augmentin XR becasue of the Sammy story, and I still think there is something to it, especially with WorriedDad's example to add to it. With that said, I can't think of a reason not to go for a full cure.

 

Alex

[momaine]

Angela....Are you working with Dr.T? What does he have your daughter on and what is the plan?

 

We are working with Dr. Trifiletti. Before we saw him dd was already on 2000mg Augmentin XR. He added 500mg Zith. Now my insurance will not cover Augmentin XR as of the new year so I'm looking into alternatives. I did write to Dr. T asking about substituting the Augmentin with Moxatag and he wrote back and said that Moxatg would not replace the Augmentin XR becasue the Clavulanic is critical to provide inhibition of beta-lactamase. (over my head) He added that Augmentin is an "extended spectrum" penicillin as well as extended release. (more extended spectrum than Moxatag, I presume, which is just amoxicillin made to release slowly)

 

But then he also said that perhaps for the present time, Amoxicillin (in the form of Moxatag) may be enough for my dd. (along with the Zith, I presume) I've written back to ask which he'd prefer for her at this time, Moxatag or regular Augmentin. I'll let you know when I know.

 

THis is so difficult to sort out. I am so in over my head.

 

Angela

[dschneider]

My son had a follow-up appt at Dr Tanya Murphy's office today. Today we saw a young Dr. who works with her. He stated that there is suggestion (and maybe he mentioned a possible study, I cannot recall) that it is the Clavulinic acid that is effective and not the amoxicillin for PANDAS patients. He mentioned the possiblility of trying children on straight Clavulanic acid (and again, I cannot recall if the word study was used). I will inquire more my next visit.

 

My 5-1/2 yr old son who presented suddenly with motor tics on 11/20/09, was incorrectly diagnosed until 12/16/09 and then was diagosed with strep, thanks to a picture of strep throat I found on the internet and this board. He has completed 30-days of antibiotics and is now off of them for 7-days. He is 90%+ symptom free and continues to show improvement. During the month of antibiotics he took Augmentin ES-600 (2x the Augmentin to Clavulinc acid) and for a very short time, regular Augmentin. I felt he did better on the Augmentin ES-600, at a higher dose, but there may have been some circumstances that occurred during his time on Augmentin that influence this opinion.

 

Like many others on the board I am giving supplements. Omega-3, Vitamin D, magnesium and a multi-vitamin. A week ago I added bilberry extract. I have searched this board to see if others use it, but did not see much. Supposedly, "bilberry can also help to decrease the permeability of the blood-brain barrier to pollutants, drugs and other undesirable chemicals by improving the resistance of the capillaries in the brain to the transfer of such substances through their walls. It does so by preventing the collagen of the capillaries in the brain being degraded either by enzymes or other agents, Also, by helping to strengthen that collagen structure so that it becomes more impermeable to the larger molecules that form the pollutants". We are giving it a try.

 

The knowlege I glean from this board and feeling secure my son's care is being overseen by someone very competent in this field is a comfort...

 

-Donna

 

 

 

 

Hi Angela,

 

So sorry you are having problems with the insurance company and so frustrating. Not to cloud the issue further, but I just got off the phone with Dr. K and along with saying that there is no PANDAS cure without IVIG, he said that he believes highly in regular Augmentin over XR exactly because of the Clavulinic acid. He is in the process of investigating if the clav acid is antiinflammatory. He also talked about beta-lactamase needing to be inhibited, even if it is not coming from the strep.

 

We went back and forth on whether or not Sammy from 'Saving Sammy' is cured or not. He seems to think that Sammy actually still has PANDAS symptoms and that he just hides them or has learned to deal with them. On this one I am going to have to go with Beth Maloney and with her son, who was debilitated with OCD and TICS, and went on to excel in high school and is seemingly a well adjusted, happy, successful college student. And for Sammy, XR was the magic bullet. So who knows. With that said, I think the MOXATAG is worth a try and good luck getting it. I think there is some sort of voucher you can get to keep the cost down. If not, according to Dr. K. at least, regular Augmentin is a good choice. But, he would certainly say don't expect a cure from it.

 

Also, from Dr. K and Diana Pohlman and LLM who posts on here, theses PANDAS docs are finally getting together to work out a standard treatment, and according to Dr K it is going to be his protocol that is adopted. He told me he has treated 500 PANDAS patients at this point.

 

PM me if you want to talk. Alex

 

This is a very timely post for me. Thanks Alex. Our insurance does not cover the Augmentin XR anymore, but does cover Moxatag. I've written to Dr. T to see if he feels this would be a good replacement.

 

I'll let you know what I hear.

 

Angela

 

I pulled this quote from Alex from another thread. I thought it was an important bit of info that needed a new topic. I checked out the website, it may be another tool to add to the PANDAS arsenal.

 

"I was doing some googling the other day and came acoss a new time release amoxicillin called MOXATAG, which other then Augmentin XR is the only time release amox. The pill is prescribed as a once a day for Strep at 775mg per dose. I have long wondered if the reason that Augmentin XR and Azithromyicn seem to be the most effective antibioitcs for PANDAS is entirely due to the fact that they are the ones that remain in the blood the longest. Azith has a very long half life, 68 hours or something, and XR is extended release. Regular amox, penicillin, and other macrolides peak pretty quickly and then dissapate rapidly. For my son, we feel strongly that he is in an ongoing battle with strep. Anytime he has no antibiotic in his system, seems to me, that his immune system would have to take over and create the dreaded antibodies.

 

I think it might be worth a try to give this new medicine a shot. For what it is worth, clavulinic acid doesn't really play any role in fighting strep. What it does is prevent other non GABHS bacteria from producing an enzyme called Beta Lactamase , making those bacteria susceptible to penicillin class drugs when they normally wouldn't be. GABHS has no resistance of it's own to penicillin/ amoxicllin. There's more to it but that is the gist.

 

To help make my case I'll point out that Augmentin XR, the way our kids are taking it, has half the clavulinic acid of regular Augmentin, but seemingly works better for PANDAS, indicating that it is not the clav acid in the XR that is doing the trick. The extended release portion of the XR is straight amox.

 

This new medicine is prescribed as a once a day but looking at the literature, it is completely gone from the blood PLASMA after 16 hours or so and at a prettly low level after 12. Two pills a day would guarantee constant coverage and still result in less total amoxiciilin, 1500mg per day, then the two Augmentin XR's kids are taking, and have none of the Clav acid, which can be pretty hard on the body. The website says the medicine is for people 12 years and older, but Augmentin XR is supposedly not for kids either. I am tempted to ask for it at our next appt. Here is the link. if anyone is interested. www.moxatag.com/

 

Alex"

 

Thanks for the info, Alex!

[Alex]

Angela....Are you working with Dr.T? What does he have your daughter on and what is the plan?

 

We are working with Dr. Trifiletti. Before we saw him dd was already on 2000mg Augmentin XR. He added 500mg Zith. Now my insurance will not cover Augmentin XR as of the new year so I'm looking into alternatives. I did write to Dr. T asking about substituting the Augmentin with Moxatag and he wrote back and said that Moxatg would not replace the Augmentin XR becasue the Clavulanic is critical to provide inhibition of beta-lactamase. (over my head) He added that Augmentin is an "extended spectrum" penicillin as well as extended release. (more extended spectrum than Moxatag, I presume, which is just amoxicillin made to release slowly)

 

But then he also said that perhaps for the present time, Amoxicillin (in the form of Moxatag) may be enough for my dd. (along with the Zith, I presume) I've written back to ask which he'd prefer for her at this time, Moxatag or regular Augmentin. I'll let you know when I know.

 

THis is so difficult to sort out. I am so in over my head.

 

Angela

 

Angela,

If you decide to do the 2 MOXATAG per day, you could also do 2X250/125mg augmentin per day. That way you would be getting the same total amount of amox as two XR, 2000mg, and still get the clav acid. In fact, you'd be getting the 250 mg of clav acid per day that Dr. K thinks is so important. What's more is you would be getting a better extended release profile from the MOXATAG then you do from the Augmentin XR.

Alex

[wornoutmom]

Angela,

Talking to Dr. K I briefly got his theory of why IVIG. He says it is necessary to halt the autoimmune process that is causing PANDAS. He does 1.5 g/kg because it is enough donor antibodies to shut down the bodies antibody production for several weeks. When the bone marrow starts making antibodies again, it has been rebooted and doesn't make the bad ones anymore. So there doesn't need to be an immune deficiency to make it necessary. I listened to Dr. K's interview on the Autism 1 program. The link is on the forum here somewhere, I'll repost it later. In it he talks about how the initiial strep infection could have been years ago, long enough for titers to go back to normal. Then, the autoimmune process is kicked in to high gear by something else, flu or whatever(Also, from Buster's posts, ASO doesn't always rise even with a recent infection) The radio program was very informative if you get a chance to listen. I'd like to get Dr. T's opinion as well since I think he believes you can cure PANDAS with antibioitcs and believes he has done it. Ugh! I wish there was some clear cut answer. I'll post my notes from the phone consult with Dr. T in a separate thread later. Alex

 

Alex,

Thanks for that info. I'll be interested in Dr. T's take on the matter. One question....would IVIG be advisable if immune system tests came back normal? Obviously, something is wrong with these kids but my dd's immune system tests were normal and she doesn't get sick easily. She's never tested positive for strep becasue we didn't know to test for it. She had many symptoms of vaginal strep (in hindsight) over the last 3 years though. I'd say we don't know for certain what is causing her problems but she's having a positive reaction to antibiotics and anti-inflammitories.

 

Angela

 

 

 

Trying to wrap my head around this. Our immunologist expressed some concern around IVIG for my son with normal IGG, in that too much donor class could raise his IGG above normal? Also struggling to understand the whole process of how the body produces "bad" antibodies when other illnesses are present. As in, once the strep antibodies get confused from the initial strep infection, the body will start to produce other confused antibodies to other bacteria/virus? Sometimes I think I have it, and then I read something else and it's all so confusing again.

 

!