MomWithOCDSon

Just as a point of information for those of you who don't know: There is now a generic form of Augmentin XR available, and it is considerably less expensive than the GSK label brand. We've been using it for the last 4+ months and can discern no efficacy differential between it and the original. It might be worth looking into, especially if your insurance is giving you trouble about paying for XR.

We don't have any experience specific to chiropractic for the immune system, but I could certainly believe it may have some efficacy. When our DS was 2 and 3, he had constant, bad, recurrent ear infections. Having been told that chronic ear infections in toddlers is frequently a factor of the position of their eustacean tubes and the viscosity of the mucous, I decided to try chiropractic adjustments to see if they would help DS get the necessary drainage in his tubes so that the fluid didn't sit in there too long and become infected. I found a chiropractor who was experienced with kids. I would lie down on the adjustment table and hold DS on top of me, basically lying across my torso. She would do a couple of quick, gentle adjustments to his neck and spine. After the first couple of times, he actually enjoyed it and would ask to go back to see Dr. Ginny. Basically, if he started to become congested or seemed to start sneezing a lot, I would head him off to the chiropractor for an adjustment. I'd say we were successful in heading off the ear infections better than 65% of the time, which was a lot for us at the time! Also, I would swear that DS's whole demeanor became "lighter" and happier after an adjustment. It obviously made him feel better. Maybe even then it was actually assisting his immune system and not just his ears! Maybe we should head back over to the chiropractor ourselves!

I haven't heard that anyone knows the "right" clav acid ratio by age or weight; it's just that regular Augmentin, for whatever reason, has almost double the clav acid ratio per mg. that XR has. But then XR is time-release, so even at a lower clav acid ratio, I suppose it's possible the drug could be more effective for some people because it stays "active" longer? The half-life of regular Augmentin is pretty short: just a few hours, as I recall (less than 8). You can Google Augmentin and find out the precise clav acid ratio and half-life, but I think the "why" and "how" of abx and PANDAS is still under study. I remember seeing somewhere here that one of the PANDAS docs prefers 875 mg. regular Augmentin to 1,000 mg. XR because the regular has a higher clav acid ratio, and he thinks that's more beneficial when it comes to PANDAS. You can also find research about clav acid being studied for its antidepressant characteristics, so perhaps that doc is right. Still, you have a number of anecdotal reports of kids faring better . . . especially long term . . . with XR than regular Augmentin; there's Sammy Maloney's story, of course, and then there are several kids here on the forum, including mine. Again, it might be an entirely individual thing and tie into personal chemistry, genetics, behavioral manifestations, etc., so it may take some trial and error to determine which abx and which dose is most beneficial for your kid. As for probiotics, I would highly recommend sach. boulardis, found in generic form in health food stores and behind your pharmacist's counter in the brand name FloraStor. This is a beneficial yeast that helps crowd out the "bad" yeast (candida) that can flourish when abx is in use. Sach B. is also known to help lessen and sometimes even alleviate diarrhea caused by abx use. It has definitely helped our DS. Good luck!

Our DS13 has very pronounced seasonal allergies; pollen gets him in the spring and the fall, and mold hits hard in the fall, as well. We've had really good success with Zyrtec by day and Benedryl by night if he's stuffy. He also takes one hit per nostril per day of a prescription generic equivalent of Flonase.

No scientist here, either . . . not by a long shot. Experientially, though, I KNOW that my DS13 is/was a strep carrier, at least for a period of years in grade school. He was constantly coming home with notices from the school about some kid in his class having strep, yet he would never develop it in the classic sense (no sore throat or fever, or even tummy trouble or miscellaneous symptoms that I can peg). Yet, within 10 days or so, either his dad or I would come down with the classic, painful sore throat. Now that he's been on abx for more than a year and we've seen so much improvement in him, you'd think he's constantly "shedding" some strep, no? But neither DH nor I have "caught" it again. So there must be something different in the intracellular strep mechanism (non-infectious but still capable of "calling out" to antibodies?). Or else DH and I have now been "converted" to carriers ourselves, from all the longterm exposure? I'm having some more blood tests here in the next few weeks, so I'll get back to you on that in terms of titer counts, etc.

Hey Smarty -- Sort of answering more in the interest of bumping this up, more so than having a definitive answer. I'm not sure I have the timeframes accurate, so someone will surely be able to check me. ASO, as I recall, rises immediately upon infection, so higher ASO is supposed to reflect strep exposure within the two weeks or so prior to the test. AntiDnase-B are "latent titers" and indicate strep exposure something like 6 to 8 weeks (or potentially more) prior to the test. I've read here repeatedly, and also had docs tell us, that it is not necessarily the level of the titers, but the direction in which they're moving.

Our DS13's titers went up after a few months of abx, also. The ped says that his titers could increase just as a result of being exposed to strep, even though he's unlikely to actually "catch it" while on full-dose abx. Since he's in public school (aka, "petri dish"), that made sense to us. I tend to agree with Peglem's comments on intracellular strep, though, as well. I think that's why a lot of PANDAS kids get good results by being on full-dose abx for extended periods . . . months, maybe even a year plus. Perhaps the longer the strep went undetected (in our case, I think it was close to 10 years), the more opportunity it has to go intracellular. And the more it goes intracellular, the longer it can take to eradicate it because it continues to be released as cells die-off.

So you're saying the positive changes arrived AFTER starting Zoloft? Or they were in evidence before, but now she's humming, singing and talking to herself AFTER Zoloft? Our DS13 also takes low-dose Zoloft and we obviously believe it assists him in terms of his mood and OCD or we wouldn't keep him on it. He, too, occasionally hums through his homework or sings silly songs, but I've not necessarily associated that with the Zoloft. I see that as a sign that he's feeling calmer, better, happier, more in control, etc. and that's just one of his creative ways of expressing himself. In our case, he doesn't do it in school, or if he does, it's not to the extent that it is disruptive, as no one's mentioned it to us. Too, he seems to recognize when he's doing it.

Melanie -- We ultimately didn't enter the study, but I had several conversations with the screener/social worker with Dr. Grant's office who's conducting the study. My notes from those conversations are as follows: - have to have had stable medications (med and dosage level) for minimum of 6 weeks prior to entering study - some meds are contra-indicated, so they have to be discontinued or switched (and leveled) at least 6 weeks prior to entering the study (don't have a full list, but know that we were told specifically that Luvox and NAC cannot be in the picture) - don't know where you live, but we're in the Midwest and the study is being conducted either in PA or DC, I believe, so we were in for lots of travel and school interruptions: something like 11 visits to the office for the first 12 weeks of the study. Then after that, I guess you can conduct follow-ups with your local doctor except for periodic. - have to discontinue CBT/ERP during the study period - and, of course, the big one: you MAY get the Riluzole, or you may get the placebo, for the first 12 weeks. That's what I know. Good luck to you, and if you decide to take the ride, let us know how it goes!

LLM -- Glad to see you're still around and that you're finding some effective treatment again at last. Having a sick child is demoralizing for anyone, no labels required! If you're like many of us, I'm betting you've stretched your bootstraps up over your ears by now! All the best as you move forward!

Well, now I have to join the throng encouraging you to address this with your DS head-on, unfortunately. Our DS never went through restrictive eating, but now your DS is refusing food he would normally eat? In my mind, then, he's definitely crossed over that line of "maybe". So sorry, but it does seem to be more serious in your case. Therapy? Steroid burst? Up or change abx? All sound like viable options, but sorry you have to go through this.

Phasmid -- Our DS13 was very similar, especially last year when the PANDAS and its OCD went off the charts. He was a very skinny . . . almost petite . . . kid up until about age 7, which was when the really harsh OCD first hit. But it wasn't until 12 that he started asking to see the old "skinny" pictures of himself and complaining that he was fat now, etc. I do think it's probably a little dysmorphia and a little standard teenage self-awareness kicking in. Probably, too, kids at school are less "politically correct" and can say some things . . . even to or about an average-sized kid . . . that makes them self-conscious. All that grade school "warm and fuzzy, be nice to everyone" stuff starts to wear off in junior high, in our experience. And how else to say it: some kids are just jerks who get their jollies out of picking on the quieter, less self-assured among them. Our DS didn't really take it any further than a mild concern about making sure his shirts were larger and loser (nothing "hugging" his body), and it also helped encourage him to take on a little more exercise, which is never a bad thing. But nothing extreme: no restrictive eating or anything like that. So long as your DS doesn't stop eating or start exercising in excess, I think it'll probably ease up as he gets used to his growing body and the way his junior high peers see themselves and treat him.

KelC -- I had another acquaintance in Australia in a similar position, and I believe he has struggled to find local doctors who understand PANDAS, as well; I do believe, however, that he finally arranged for his doctor to have a conference call with Dr. K. here in the states regarding some treatment protocols. Perhaps that would be an option for you. I also want to say that we have had a different response via the judicious use of an SSRI. While I would agree with some of the experiences here as well as the Murphy/Storch paper you've already been given a link to, I will also offer that we're currently supplementing our DS13's care with not only Augmentin, supplements and ERP but also low-dose Zoloft. And when I say low-dose, I mean low-dose. Some of these kids can become "activated" by as little as 1/5th the "average" dose, but our experience illustrates that an appropriately low dose can be helpful. Our son had a long history of diagnosed OCD before we found PANDAS, so he had been taking an SSRI for a number of years, always at a low dose. It was helpful, and I don't see it as merely "covering up" an issue, necessarily; if serotonin and/or dopamine levels in a brain are not properly regulated for whatever reason, then an SSRI may be of valid assistance. That being said, having discovered now that his OCD is "triggered" by strep exposure, I would never go back to addressing his condition with only therapy or SSRI's; we know now that Augmentin is key to his health. Still, his management over his OCD behaviors, we felt, warranted some additional assistance, and so we've decided that we will attack this thing from all sides, including an SSRI. Before abx, our psych took the typical step of consistently increasing the SSRI dosage when our DS failed to respond, and, yes, we saw the activation phenomenon and an actual increase in the undesirable behaviors, rather than a decrease. But after we began abx treatment and this forum gave us access to important information like the Murphy study, we were better informed and able to guard against over-dosing our DS. So, again, just our experience and not necessarily a good choice for everyone. But because we've had such positive results, I really want to add to the balance of the viewpoints here. Plus, the Murphy/Storch study does not malign the use of SSRI's altogether for PANDAS kids; actually, it notes that there were some positive results when coming back to treatment beginning with a very low dose. Just something to consider alongside all available information . . .

Thanks, Smarty! What a great idea! In our case, DS didn't trick or treat (too old and "cool" for that, apparently ), but we didn't have a big turn-out in the neighborhood, so I certainly have some candy left over that we don't need to consume, and I bet our neighbors are in a similar position. Maybe I'll take up a collection and send it off! By the way, we've done similar things over the last few years via groups like Books for Soldiers, etc. Seems like a great way to "recycle" paperbacks, magazines, candy, etc. and get them to some folks who really appreciate them!

Yet another example of twin PANDAS sons of different mothers! Our DS is also 99th percentile and has the memory of an elephant. When he's been under the weather PANDAS-wise, he's complained that he's done his math homework "without thinking about it" or "automatically." He says he's can't remember thinking about it or how he did the problems! In our case, though, HE'S the one who's assuming he's gotten them wrong because of his OCD doubting, but they always turn out right. It's crazy! Glad to hear that someone else has had a similar experience; it should lend some comfort to our DS to know he's not alone (once again!).

Happy, happy! Joy, joy! At last this year, it was no PANDAS tricks for Allie, just treats! Bet she's on Cloud 9! And she'll have candy for a few days to remind her of a really special day. Help yourself to a Snickers for a job well done!

There have been strep breakthroughs with Augmentin, so keep an eye on him. Also, if there's any chance anyone he's come in contact with has strep, he could be reacting to the exposure, even though the Augmentin will likely prevent him from developing an active infection. Some PANDAS kids will begin to mount additional strep antibodies merely as a result of coming into contact with strep, even when they don't actually catch it. Make sure you give him the acidolpholus at least 2 hours away from the antiobiotics dose, or the antibiotics will kill the acidolpholus along with other bacteria. There are other probiotics, meanwhile, that antibiotics don't readily kill off, like sach b. (sold as FloraStor at pharmacies) and lactobillus (sold as Culturelle in pharmacies and grocery stores). Those will help and don't have to be dosed separately necessarily. Good luck!

How old/heavy is your DS and what dose of Augmentin is he receiving? And when did you start giving it to him? We've used solely Augmentin with our DS, and, yes, while it's not an instant response, we have gotten his PANDAS under control with the Augmentin, along with some anti-inflammatory supplements (like fish oil) and probiotics. Depending on how long your son has been taking it, I would think that his behavior is either a reflection of 1) he's not been taking it long enough for positive results to manifest, and he's just continuing to ramp up on the PANDAS rage behavior, 2) the dosage is inadequate for positive results to manifest, and/or 3) perhaps, the Augmentin is at an appropriate dosage and IS working against the PANDAS, but there's a mounting yeast issue (yeast can cause some kids to behave oddly) with which you need to contend. When we first began Augmentin, our DS13 showed some improvement within as little as 48 hours: namely, his contamination OCD went way down and had virtually disappeared within about one week. That's not to say, however, that the improvement stayed on that trajectory. The pace of improvement definitely slowed dramatically over the year we had him on full, high dose Augmentin, and he had some "stutter steps," too, where it would be two steps forward and then one step back. It wasn't a miracle "cure" in terms of being either overnight or rock solid. But the overall improvement has been remarkable, all things considered. It's just a long process.

You are AWESOME! How about cc'ing (or contacting separately) Dr. Swedo, Dr. Leckman, Dr. T., Dr. K. etc. ? Great idea! I have Cunningham's, Dr. T.'s and Dr. K's email addresses; anyone have Swedo's and Leckman's to share?

I seriously doubt that Lyme is a contender here. She doesn't travel, she's not an "outdoorsy" type, and she has no pets at all. Seems much more likely to me that she picked up something in her last hospital stay, or that the infection that brought her into the hospital in the first place has not been properly eradicated. Or, even, that given chemo for the cancer and her subsequent viral and bacterial illnesses, her immune system has just become so majorly compromised that it's whacked out. I'll be sure to follow up with her in a few days and see if she's gotten any help from her doctor. Thanks again to you and everyone else for the ideas and support.

I don't know that inflammation means lots of glutamate; I'm basically wondering IF the inflammation Swedo noted is related to the glutamate-filled caudate illustrated in the Case Western brain scans. It's more of a question than a premise. As for glutamate's relationship with dopamine, I know I've seen some papers on glutamate that also mention dopamine, but I'm not sure there's a causal relationship; I'll have to re-read. Also, so far as I've seen in the research anyway, glutamate is referenced with respect to OCD, but not TS specifically. Since there is that "brand" of TS known as tourettic OCD, however, one would think that there could be some relationship. I admittedly haven't followed the TS side of the research much as my household is dealing with other issues.

I'm no doctor or scientist, but everything I've found on line and in the research points to NAC being a "natural" glutamate agonist, just as Riluzole is a manufactured, prescription glutamate agonist. Supposedly, NAC "reduces glutamate hyperactivity" in the brain. NAC and OCD

I just "carpet-bomb" folks with research and information until they figure it'd just be easier to go along with me than to fight me. My mom used to call me "stubborn." I just like to think of it as "persistent" and "resilient."

Thanks everyone. Yes, she's a pretty remarkable lady, and while the cancer and various illnesses before this barely seemed to "touch her" in any deeply troubling way, this plunge into a world of anxiety has really shaken her. It's written all over her face. Great idea to contact Dr. Cunningham; I think I will, if only to see what she thinks about it. Vickie, I honestly thought about asking her if she would like me to go with her to her doctor, but then I had to settle down and rethink it, if just a bit. I've got my own young PANDA to deal with at home, plus a husband and a full-time job; even if she'd allow me to become part of her healthcare picture, I'm not sure it would be wise for me to take that on. For the time being, I'm hoping I've armed her well with the packet of research and my personal cover letter that will at least get the doctor thinking; hopefully, it won't be so much about him believing HER as it will be him taking the time to ingest what I've sent her in there with. I figure that if this sort of "removed support" doesn't work at all, and she asks me for more direct help, I will of course step up to the plate. I will keep you informed as I get more information. Thanks again for the ideas!

A couple of days ago, I was out raking our monstrous maple leaf collection in the front yard when my elderly neighbor stepped out on her porch and called out to me. This lady is 82, widowed and has faced some major health problems in recent years, including cancer. That being said, she has always been very "with it" mentally: friendly, holds a conversation well, driving herself places, attending her church, running the local United Way drive, etc. Anyway, she tells me that she's developed an "anxiety problem." She says she worries about everything and everybody, and that she can't seem to stop. Then she tells me she's very afraid of germs. I asked her if this came on suddenly, and she said yes, just this past summer, after she was hospitalized for a bad upper respiratory infection. She says first her doctor gave her Lexapro but it didn't help, so now she's taking Prozac and clonansepam. She invited me inside her normally neat, tidy little house. It's still tidy, but she's begun to hoard. It is organized hoarding . . . lined up along all the walls . . . but it is a dramatic amount of stuff she's accumulated since I was last in her home. And true to her reporting of her fear of germs, she's got everything covered with tissues or paper towels (like the phone) so that she doesn't have to touch it directly, and it appears she's eating off paper plates with plastic utensils so that they can be thrown away after a single use. All of this is dramatically different from less than a year ago. I found myself telling her about my DS and his journey through anxiety and OCD and, finally, the help he's gotten from PANDAS treatment via antibiotics. She was stunned, of course. I asked her if her doctor had tested her for any infections, like strep or myco p., and she said no. I told her I had some research that I could share with her, and maybe she could give it to her doctor and see if he would at least give abx a try, since first the Lexapro and now the Prozac don't seem to be helping her at all. I came home and printed out a rheam of research and information on infection and mental illness, and then I wrote a cover letter to her which she could also show her doctor with bullet points of major facts and findings, including our personal experiences with our DS. She's said she'll take the packet with her to her next doctor's appointment. First I was floored, and now I'm just certain that the Universe works in mysterious ways. I just hope her doctor will step outside the box a little and give it a try . . . . . .