Alex

Hi Coco, It is always a good idea to check any info posted on this forum through other sources, so good for you to ask your pharmacist. As we PANDAS parents have seen so often with physicians, medical professionals often have incomplete knowledge but they state thier opinions as absolute fact. The ulimate authority in this case is the manufacurer, GlaxoSmithKline. When I posted that you can break the pill in half, I got that information straight from the GlaxoSmithKline manufacturer's website. Here is the quote. "Scored AUGMENTIN XR Extended Release Tablets are available for greater convenience for adult patients who have difficulty swallowing. The scored tablet is not intended to reduce the dosage of medication taken; as stated in the table above, the recommended dose of AUGMENTIN XR is two tablets twice a day (every 12 hours)" Here is the link. http://www.gsk.com/products/prescription-m...s/augmentin.htm Augmentin XR is the last product listed on the webpage on the this link. Click on it and the PDF file comes up. The info on how to take it is near the bottom. I guess it doesn't actually say you can break it in half, but what good does scoring it do if you don't break it? If you google 'Augmentin XR half' , several drug info web pages come up that also say you can break it in half. Also, as you can see from the quote, the recommeneded adult dose is four tablets a day, granted that is for adults and is typically for 10 days, but it makes the point that two pills a day isn't really such a high dose after all. Hope this helps clear up the confusion. Alex

Just one quick thoughut. On this forum I think the 'Saving Sammy' dose has been perceived as some really high dose. Turns out it is not. For anyone with a child/teen over say 100lbs then you would probably be a go for the full 4000mg daily (recommended in fact) dose of XR. Maybe better would be three pills spaced 8 hours apart to enhance the extended coverage aspect. The dosing guidlines that I read did allow for 8 hour spacing. The hard part about that would be that the XR is supposed to be taken immediately before a regular meal which would be tough to do on an 8 hour schedule. Alex

Thanks, Alex. That's great info, and something I hadn't been able to get a clear answer on before. Do you by any chance have an article or reference for the information regarding the XR? I'd like to be able to take it with me to the next ped appointment if so. Thanks again! Here is a link to a GlaxoSmithKline press release on Augmentin XR from 2002 http://www.gsk.com/press_archive/press_09262002.htm Here are a couple of quotes from the article. "Augmentin XR employs a unique extended release formulation—bi-layer tablets that provide an immediate release of amoxicillin and clavulanate potassium and an extended release of amoxicillin. This enhanced formulation prolongs the time that the bacterium is exposed to the antibiotic and promotes coverage of tough-to-treat S. pneumoniae. " "Augmentin® Tablets (250 mg or 500 mg) cannot be used to provide the same dosages as Augmentin XR Extended Release Tablets. This is because Augmentin XR contains 62.5 mg of clavulanate, while the Augmentin 250 mg and 500 mg tablets each contain 125 mg of clavulanate. In addition, the Extended Release Tablets provide an extended time course of plasma amoxicillin concentrations compared to immediate release Tablets. Thus two Augmentin 500 mg tablets are not equivalent to one Augmentin XR tablet." Here is the link to a Drugs.com artilce on Augmentin XR saying you can break the pill in half. http://www.drugs.com/augmentin.html Here is the quote from the article. "Do not crush or chew the Augmentin XR (extended-release) tablet. Swallow the pill whole, or break the pill in half and take both halves one at a time. If you have trouble swallowing a whole or half pill, talk with your doctor about using another form of Augmentin. " I would guess that breaking the pill in half would have some negative effect on the time release aspect just because you are exposing more surface area of the exteneded release portion more quickly but I imagine still get the majority of the controlled release aspect. Dr. B prescibed the Augmentin XR for Eli and he just took his first dose and was immediately cured of PANDAS. I wish. Eli is also a go for monthly IVIG starting Friday. Part of me wants to see how he would do on the Augmentin XR alone but more than anything we want to put PANDAS as far behind us as quickly as possible so will almost certainly proceed with the IVIG. We will keep you posted. Alex

Hi all, I have done a couple of posts on the forum regarding the Augmentin XR vs. the regular Augmentin. The main point I tried to make was that for Sammy Maloney from 'Saving Sammy', augmentin was not really effective until he was on 2000mg a day of the extended release version. So for anyone trying Augmentin as a PANDAS treatment, you don't really know if it is an effective treatment for your child until you try what worked for Sammy. I have done a little reading on the Augmentin XR and found out a few things. First, you can break the pill in half, but you have to take both halves at the same time. Not sure why but it could be that the clavulinic acid is not distributed evently between the two halves. Second, adult dosing of Augmentin XR is up to 4000mg a day. So the Saving Sammy dose is not really that high at all. In fact, pediatric dosing for amoxicillin allows for up to 90 mg/kg per day. So my 70lb son could take 2700mg per day per pediatric dosing guidlines. So again, the 2000mg dosing is really an ordinary dose. Two 1000mg augmentin XR combined contain 125mg of clavulinic acid, half the amount you get from any standard two augmentin pills, be it the 500mg or 875 variety. So it would take the full adult dose of 4000mg per day to equal the clavulinic acid in just two 500mg regualar augmentin pills. The augmenitn XR consists of an outer layer of immediate release augmentin with an inner portion of controlled release amoxicillin resulting in sustained blood plasma levels of amoxicillin compared to regular augmentin. My own layperson's theory on why the XR may have worked better for Sammy and for others on this forum who have tried it is that if a strep inefection is ongoing, or intracellular, and you are not curing it through antibioitics but instead managing it long term, then a more continuous presence of antibioitic would let the immune system back off, allowing the dreaded antibodies to dissapate over time. So, Augmentin XR has less clavulinic acid, sustains the antibioitic level in the blood plasma longer and seems to work better then regular augmentin for those who have tried it. We are seeing Dr. Bouboulis today and I am going to make my case that we should give it a try for my son. Alex

Have you seen an ENT for a sinus scope or X-ray? Might be a good way to fing out if there is any sinus problem.

Jack, Augmentin XR has an outer portion that is immediate release Augmentin and an inner portion that is controlled release amoxicillin resulting in a sustained level of amoxicillin in the blood for a longer period of time. Regular Augmentin is all immediate release. I have wondered before if this is the reason Sammy from 'Saving Sammy' fared well on the Augmentin XR but not as well on the lower dose Augmentin. Was it really the higher dose that made the difference, or was it the more continuous presenece of amoxicillin in the blood that did the trick? The sixty four thousand dollar question seems to be do PANDAS kids have an ongoing battle with strep or not, and is it strep you can get rid of or something you have to manage? If you have to manage it then it seems to me a more continuous presenece of antibioitic in the blood would allow the immune system to back off, in turn letting the dreaded antibodies to dissapate over time. Apparently there is no such thing, in the U.S. at least, of penicillin resistant GABHS. However, other bacteira which are penicillin resistant through the production of beta -lactamase can protect GABHS by disabling the penicillin. That is where the clavulinic acid comes in to play. The clavulinic acid inhibits beta-lactamase allowing the penicillin to do it's job. If I'm reading it right, you don't need Augmentin to fight the strep, but you do need it to fight the beta-latamase bacteria present in the body, allowing the amoxicillin to get the strep. Here is a link to an article that talks about this stuff. http://www.biomedcentral.com/content/pdf/1471-2334-9-202.pdf

Check out SF Mom's recent post 'Important to Understand!' which uses several research studies to make the case that there is an ongoing Strep presence in these kids and that is the real reason you are treating with antibioitcs. Alex

-Wendy, Great information. Thank you so much. I have been spending the evening trying to digest it all. One of the biggest questions for all of us who have children with PANDAS is why antibiotics? I have read on this forum about parent after parent being unable to get antibioitcs for their PANDAS kids becasue they haven't been able to give a defintive reason for them. This very topic has been a friendship ender between some physician friends skeptical of PANDAS and my wife and I because we haven't been able to explain to them why my son needs to be on antibioitcs if he is not culturing positive for strep. I am having a hard time seeing how the three studies together show that the strep is still present? I gathered that in children with Kawasaki disease there was an early expsosure to strep that the immune system was unprepared to handle properly setting them up for future improper immune responses to strep, that strep toxins can destroy ImmunoGlobulins and that improper immune response to strep is responsible for PANDAS. How does this show that the strep is still present? Is it because many kids with PANDAS have low IG levels showing that the IG is being destroyed by strep? Or does the Kawasaki study show that those kids have detectable strep toxins long after the fever part of the illness has ended. I honestly don't get it. As far as the antibiotics goes, the common explanation I have heard on this forum is that their benefit to PANDAS kids comes from their immune modulating and anti-inflammatory properties. That explanation has never been very satisfying to me. In my son's case we know for a fact that his most recent and by far most severe PANDAS episode was casued by a strep infection that went entirely untreated(negative rapid strep so no antibiotics from pediatrician even though had all the clinical symptoms, ASO titer through the roof 6 weeks later when son going off the deep end). If GABHS has the ability to go deep into the body then my son most certainly still has it. We also know that without constant antibiotics his symptoms become incapacitating. When my son left the hospital after PEX, his ASO titer was 30. Seven weeks later when his PANDAS was returning, his ASO was back in the high 200's. I have believed all along that he still had strep and that it was what was casuing the ASO to come back up. I would love to be able to make a clear case to those who will listen that kids with PANDAS have an ongoing battle with strep if that is the case. Wendy, if you, or Buster or someone can make it more clear to a simpleton like me I would appreciate it. Alex

Brooke, sorry to hear about the strep. The big question is why a new strep infection. Does your child still have tonsil/ adenoids? Any chance they are the culprits? Checking the other family members is also a great idea. And also, why an infection while on antibiotics. Were you on full strength or prophlactic dose? As we learned from our own PEX experience, afterward you have to stay on full stregnth antibiotics for a long time, mainly for this very reason. After you get rid of the infection I would imagine that a steriod burst would be a good idea. I haven't seen any good info on how steriods impact the effectiveness of antibiotics but would imagine antibioitcs don't work as well because they need to work with the immune system to kill the strep, and the immune system as I understand it is pretty much shut down while on the steroid. So, my lay persons opinion is antibiotics first, then the steroid. Number one though is figure out why a new infection and keep it from happening again. . We started seeing Dr. Bouboulis and he strongly believes that PEX has to be followed up with IVIG. Alex

Hi Joan, 7 weeks does sound like a long time. With an ASO that high though, it may have to come way down before you start seeing some postive changes. I would think rechecking the ASO level to see if it has dropped might be a good place to start. If it is on the way down significantly then maybe stick with the Augmentin. If not, time to try azithromycin. And if that doesn't work, keep experimenting until you find an antibioitc that works. I spoke to Dr. Trifiletti a few days ago and he suggested that you keep experimenting with different antibioitcs until you find the right one. He even suggested combining different ones if necessary. If the tonsils are in bad shape, I'm not sure any antibiotic is going to work until they come out. After they're out, from what I have heard, it takes some time for things to settle down before the positve changes start happening. You may want to start your own thread on this one where it will get some more attention. Good luck, Alex I'm new to this and not sure I am doing this correctly. My son has been on 2,000 mg augmentin for 7 weeks without any results. His ASO was 1,014, 7 weeks ago. We are having his tonsils out on Tuesday. Has anyone tried Augmentin then switched to Azithromax? If so, How do you dose it? Has anyone taken more than 7 weeks to see results with Augmentin? I just discovered my son has a slightly elevated Billirubin. I have been told that it probably doesn't mean anything.

Just a thought I have been having I wanted to mention. In 'Saving Sammy', Sammy was on Augmentin XR, the extended release version. Many kids have success on azithromycin. The similarity between the two that I see is that they are both present in the sytem all the time. Azithromycin has a long half life and the augmentin XR is realsed slowly so that it is still working until you get the next dose. If there is intracellular strep or hidden strep, then the antibioitc is there all the time to aid the immune system, maybe I think preventing the creation of much of an antibody response. That is what we want, no new antibodies while the ones already created dissapate. If I was trying the augmentin route, which we hope to, I would make sure it was augmentin XR and I would be exact with the timing of the dosing to make sure that there was constant antibioitc presence so the immune system was never left alone to fight any infection. Again, in 'Saving Sammy' it was the right dose of the right kind of augmentin. She had initial success with amoxcillin but it quickly stopped working. Beth Maloney stresses that she was meticulous with the timing of the dosages. If it was four times a day, she got up a two in the morning to make sure the doses were spaced evenly. With 'Saving Ssammy' you have an example of a protocal that, in my opinion, worked very well. I wouldn't alter it one bit whatsover. Alex

My son is currently on an extended course of prednisone and is also taking 250mg of azithromycin daily. Does anyone know to how large of a degree prednisone lessens the effectiveness of antibiotics? I have read that becuase prednisone represses the immune system, it makes it more difficult for antibiotics to do their job aiding the immune system to kill bacteria. Alex

Ellen, we will certainly keep you posted. I said it somewhere else, but in hindsight I wish we had given my son daily antibiotics after the PEX right from the start. EAMom, SFMom, Diana Pohlman( all angels in my opinion) and others whose kids are doing well in recovery, stress the daily antibiotics. It sounds obviously that you are in a difficult situation, but with the probiotics hopefully you can try the azith every day, something that I believe Dr. Latimer will be willing to do from now on. Also, my son got hives while on penecillin when he was a toddler. He now tests negative for the allergy and we are waiting for an oral challenge. The allergist says that he either never had an allergy but got hives due to a virus while coincidently taking penecillin, or just grew out of it. Might be worth a try. Alex

We had our appointment with Dr. Latimer on Wednesday. She gave my son a neurological exam and said that he no longer has any Chorea, as compared to pre Plasmapheresis. She felt this is a good sign despite the high Cam Kinase. My son was just finishing up a two week course of prednisone, 30mg/day the first week and 15 the second. The last few days before the appointment we started to see a little progress, but not much. The progress consisted solely of making it through a couple of days in a row without a major rage. We'll take it at this point but certainly not what we were hoping for going into the PEX. Because of the high Cam Knase and how awful things have been with our son, I went in to the appointment hoping Dr. Latimer would recommend IVIG. We are so desperate to get our son and our lives back that I probably would have had him do it that day if she gave us the go. She feels, however, that the abscence of Chorea is positive and recommended continuing with prednisone for another month. She also would like to switch him to augmentin but that is a no go until we can find someone up here in Maine willing to do an oral challenge for penecillin allergy, which he has supposedly had since age 2 but now tested negative for on an allergy test. Until then she wanted to keep him on 250mg of azith every other day. I mentioned that I was aware of a good number of kids who were on 250mg every day and she called an infectious disease MD friend who said that 250/day was fine long term so we got the prescription. She wants to see where things are in a month and then revisit the idea of IVIG if my son is still having signifcant issues. I am skeptical that more prednisone is going to do the trick considering that since he relapsed post pex due to the tooth infection he has now done a one week and a two week course of prednisone. I feel pretty strongly that the PEX worked but that we lost the benefits due to the tooth infection and aren't going to get them back. She, I believe, feels that is not necessarily the case. I hope she is right but think it is possible that she is too attached to the idea that PEX is an absolute cure. I think it is a cure too, so long as something doesn't happen to mess it up, and preventing that something from happening isn't so easy. I read the study on intracellular strep that Buster provided the link to. In the study they found erythromycin and azithromycin much more effective then penecillin at killing intracellular strep in epithelial cells. Augmentin was not tested. Epithelial cells have a short lifespan of a few days. I wonder if maybe strep can go intracellular in other types of cells that do not have such a short lifespan. What if these cells also can not be penetrated by any antibioitic. As these cells die/burst, they would constanly be giving the immune system a reason to be producing strep antiboides. In 'Saving Sammy', Sammy was on augmentin for 4 years with a reduction in dosage causing a return of symptoms. Maybe 4 years was the amount of time it took for all of the cells in his body that contained intracellular strep to die. Without the constant dose of augmentin there to aid in quickly killing any stray strep bacteria, the immune response would be constantly resulting in an elevated antibody level, with, in turn, elevated PANDAS symptoms. I know in my son's case, his strep went undiagnosed and was not treated with antibiotics. Eventually the immune system suppressed the infection but there was certainly an extended opportunity for strep to get as intracellular as it can possibly get. Buster, I'd be curious to get your opinion on this if you get a chance. Thanks Alex

In 'Saving Sammy' the augmentin type and dose had to be just right or it did not work. She had her son on 2000mg of Augmentin every day, and I'm pretty sure it was the extended release kind XR. At a lower dose the treatment was not as effective and her son had lots of PANDAS symptoms. I don't know what Sammy's weight was but he was around 13 years old so probably over 100lbs. If I was going to go the augmentin route, and we hope to if we can verify that my son is not penecillin allergic, I plan to do pretty much exactly what worked for Sammy because anything less in was not effective.

Ditto what LLM said. My son had one of his worst days ever about a week after PEX but then we saw steady improvement. In addition, be as agressive as you can with anitbiotics. We saw Dr. Latimer yesterday and she called an infectious disease MD while we were there who said 250mg a day of azith is perfectly fine long term. I would absolutely push for that to cut down the chances of new infections or fight any immune responses if there happened to be some intracellualar strep lurking in there somewhere. Or do augmentin if there is no penecillin allergy. Alex

In "Saving Sammy", it wasn't just augmentin that did the trick, it was the right dose and the right type. If they lowered the dose from 2000mg a day, he got worse. Also, it was apparetnly augmentin XR, extended release augmentin. So from that I would say if you are going to follow the Saving Sammy approach, follow it exactly becasue it had to be exactly right for Sammy for it to work. It is an experiment in progress, tweak things if it is not going well. Dr. Latimer said to me yesterday that there is no harm in taking megadoses of penecillin, not so sure aboiut the clavulanic acid which I think there might be a limit to but still, I would up the dose to the limit and then see if it works, If it doen't work at that dose then you might have to come up with another plan. If it does work, you can try backing off from the high dose and see what happens. Again, that's what Beth Maloney did, she backed off the high dose a couple times and had to go back up until eventually they were able to lower the dose withouth complications. Good luck, Alex

Hi DCMom, I believe my son and I were in the waiting room today while Julia had her appointment. So glad things are going well. Sorry we didn't introduce ourselves but I didn't want to be nosy. Our news wasn't quite as good but not that bad either. Stay vigilant. Alex

My son completed 3 rounds of plasmapheresis on Aug 22. He was doing great until an infected tooth went untreated for what was probably an exteneded period of time. Had blood drawn on Oct 22, two months post PEX, for the Cunningham tests and found out today that his CaM Kinase II was 173 at the time of the draw. He was finishing a 10 day course of full stength Omnicef at the time of the draw. Since he has been on erythromycin (my request becasue he seemed to respond to it really well after the tooth pull) and just finished a week of 30mg/day of prednisolone (he is 68lbs) with a week of 15mg per/day to follow. His most pronounced symptom as of late is lots and lots of terrible anger. His OCD has been pretty mild, but his appearance has been bad, with continuous dark circles under his eyes. I think he has a new mild tic as well, sort of sucking his tounge to make a clicking sound. I was guessing he was going to have a CaM Kinase score on the lower end of the PANDAS scale. Of course we are suprised and disheartened at this result. We have an appointment with Dr. Latimer next week to figure out our next step. We are also going to see his dentist in a few days to make 100% certain he does not have any more infected teeth. He did have at least one other cavity that the dentist decided to leave untreated becasue it is a baby tooth that should fall out sometime in the next year. I hate posting bad news, especially for those recently finished with PEX or considering it. I said somewhere else that if I had it to do over again I would have made sure my son went into the PEX 100% healthy, been on full strength antibioitcs before during and after and would have done everything in our power to avoid immune system challenges for as long as possible after the procedure. Going in to the PEX I thought we were in good shape, but I was unaware of his tooth situation. I also asked for the antibiotics but did not get them. I think Dr. Latimer has since become a little more liberal with them. We are at a loss as to what to do now but are pretty certain that the benefits of the PEX have been lost to my son. Any adivce would be appreciated. Alex

My son had both a tooth infection and a cavity filled. The tooth infection was far worse. He had a bad day or two after getting the cavity filled and then things settled down. Personnaly I think you did the right thing getting the cavity filled because letting it go could eventually lead to infection. Maybe up the antibiotics for a day or two. Good luck, Alex

Hi bronxmom2. Glad things went well for your son during the PEX. We finished PEX at Georgetown on August 22 and I wanted to say my two cents. It took a week or so for us to start to see the postive results from the PEX. Not that your son's or anyones recovery will be the same but by three weeks we had seen some large improvements and were very excited. At that point things started to go downhill. It turns out my son had a tooth infection that probably went undiagnosed for some time. Things have been mixed since. I think it's possible that the infection and the exteneded time it went undiagnosed might keep us from ever realizaing the full benefits of the PEX. My point is if we had it to do over again I would do everything in my power to keep my son from having any immune system challenges for as long as possible after PEX. This in my opinion would be full strength anti-biotics, no vaccines, make sure the teeth are in good shape, anti-biotic ointment on cuts, and a self contained sterile bubble environment for ten or so years like the bubble boy. Just kidding on that last part but be vigilant and jump on any flareups. If your son is already on antibiotics and things start to go backwards significantly I'd call Dr. Latimer for prednisone. Good luck.

My son had Plasma Exchange 8 weeks ago and was doing great until he had a tooth infection go undiagnosed for at least a week. Before the tooth was discoverd infected and pulled his PANDAS symptoms were flaring back up. After the tooth was pulled he remained on an antibioitc for several days and had a fantastic day the last day of the antibiotic but started to have PANDAS symptoms flare back up as time went on. In conjunction he started to look worse and worse. He had dark circles under his eyes and a pallor to his skin. We brought him to the Pediatrician on a Friday because I was convinced he had a sinus infection. The ped didn't think so but thought allergies instead. The next day my son had no energy, looked terrible and had a headache and his PANDAS symtoms were awful. We called the Ped's office which was closed but convinced the on call to give us an antibiotic. He has been on Omnicef for 10 days and his PANDAS symptoms have gone way down but my son is still not back to where he was at his best after the PEX. He looks a lot better too, but still with a little bit of dark circles Now I am wondering if the dark circles and pallor were really just a result of the antibody attack on his system from the PANDAS coming back and that the ped was correct that there was no sinus infection. We are worried about what is going to happen after the full stregth omnicef ends and he goes back to prophylactic dose of azith. Anybody else see this type of appearance just from PANDAS? Alex

Thanks Buster, Interesting stuff, what I understood of it. In an autoimmune disease such as PANDAS, does the immune system response continue unabated even after the infecting bacteria is wiped out becasue the body's own cells are mistaken as the invader?

Here is the link to the study on adults who had Plasma Exchange for strep triggered OCD. Haven't read it recently but I believe the results were very promising. http://www.turkpsikiyatri.com/en/default.a...icle&id=592 Lots to learn from this forum. Hopefully you can find enough info, including the study above, to convince a doctor to try one of the immuno treatments. The key we are finding though, after our own son's experience with Plasma Exchange, is that after the immuno treatment, you have to keep infections away or jump on them immediately and agressively, or as you found, you can lose some or all of the benefit. Good luck to you. Alex