MomWithOCDSon

Thank you!

The mixed probiotic was not specifically doctor-recommended. She recommended the Culturelle, but frankly, she's a fairly conventional, western-trained physician and not really well-versed in or even especially receptive to any "natural," homeopathic or even integrative medical treatments. So I think she mentioned Culturelle due to its ubiquitous nature and availability in the grocery store, etc. We started the mixed-strain based on discussions and experiences posted here on the forum, as combined with the fact that the Renew Life was readily available at our local Vitamin Shoppe and Whole Foods stores, and we could get it in a 60 billion unit single capsule, which helped cut down on the sheer number of pills/capsules DS had to consume in a given day. Also figured that the broader the variety of flora in the gut, the greater likelihood that it would survive the abx, foods, etc. and crowd out the bad stuff -- like candida and c-difficile. It worked for us, but I'm sure everyone's gut biome is highly individualized. All the best!

What are you trying to achieve with the probiotic? Is your son taking antibiotics currently? It is probably best to dose probiotics over the course of the day -- or at least some in the morning and some in the evening (maybe at breakfast and again at dinner?) -- so that the gut is consistently repopulated with beneficial flora. Some probiotics are particularly beneficial for certain issues, but a mixed strain is probably ideal if you're not trying to address anything in particular. Lactobacillus gg (Culturelle) is supposed to be good for combatting anxiety and depression. Sachromyces boulardi (Florastor) is good for diarrhea and other GI distress issues. If your son is not taking antibiotics or some other treatment that tends to kill off gut flora, then probably 20 to 50 billion units per day is adequate. If he's on an antibiotic regimen, I would suggest somewhere upwards of 100 to 200 billion units per day, and spaced at least an hour or two apart from the antibiotics. Also just know that one of the most readily available probiotics - acidolpholus (found in yogurt and kefir and some cheeses) -- is susceptible to antibiotics and cannot outlive them. So just mix it up and don't rely on yogurt or any other single source alone, and you should be okay. All the best.

No experience with either specifically for anxiety or OCD, but have used meditation regularly for years to improve mood, reduce "standard levels" of anxiety, etc. It definitely works, but I would encourage anyone starting out to take a class and/or regular classes initially with an expert practitioner so that you can learn the proper way to go about it and build the skill set. As for hypnotherapy, I know some people who swear by it for other purposes (quitting smoking, for instance), but I've not really heard or read of it being especially successful for anxiety or OCD; I suspect that's probably because the anxiety and/or OCD tend to be very strongly (and at least partially genetically) wired. And perhaps the anxiety/OCD competes for the same brain pathways that the hypnosis utilizes? At any rate, assuming you have the means and access to an established and well-referenced specialist in this area, I don't suppose it would harm to try it. Let us know how it goes!

While taking antibiotics, my DS took about 200 billion units daily of mixed probiotics: sach b, Culturelle (lactobacillus gg), and a mixed strain probiotic by Renew Life. I don't believe the sach b contains either dairy or gluten; the brand we used was Jarrow.

Yes, if inflammation is a significant contributor to PANDAS/PANs behaviors, a steroid "burst" usually results in a reduction of those for a short period; however, it's my understanding that a "burst" is predominantly used as a diagnostic tool to determine if significant inflammation is at play. A somewhat longer course of steroids has been prescribed by some docs for treatment purposes, though we didn't utilize that for treatment ourselves, so I'll have to leave it to others to chime in on that. As for IVIG in Washington State, I'm not sure; there is a list of "doctors who've helped us" among the Pinned Threads at the top of this forum, so perhaps there's a name there in your area. I'm certain there are some in Northern California/the Bay Area that offer IVIG, but again, hopefully some others will chime in here before too long. Good luck!

LIke many of your other symptoms, Hitman, yes, we can relate. And yes, I believe your "zoning out" is PANDAS/PANs related. My son used to do that almost constantly. Like he'd just blank out for a moment, be complete disassociated from where he was, what he was doing, what someone had just said to him, etc. There are a couple of kids here, at least, for whom anti-seizure medications have been successfully prescribed, even though there's no blatant evidence of actual seizure activity, reason being, some seizures are believed to be related again to glutamate dysregulation, and some of the anit-seizure meds help with that. My DS, for instance, was prescribed lamigotrine (non-generic name being Lamictal), and it was very helpful for him. Interestingly enough, additionally, his prescribing psych told us that Lamictal was used off-label for both some OCD issues as well as autism spectrum disorders. Perhaps something like this might be a missing piece of your puzzle? I would pursue glutamate modulation, whether via pharmacological or "natural" routes.

I don't think we saw true weight gain as a result of the abx themselves, but as his health returned and he felt less anxious and more himself, his appetite improved, he slept better, and he spent fewer calories pacing and fidgeting, so our DS gained some weight over his healing period, also. Is it possible you're seeing these contributory results, rather than the gain being directly tied to the abx themselves? As for the bloated tummy, I'm sure you know that abx can cause some GI distress. Are you also giving your DS a good probiotic (ideally, dosed a few hours apart from the abx dosing)? I would especially recommend sachromycces boulardi, or "sach b," which is a good/beneficial yeast that fights off candida and other "bad yeasts" that can build when you take antibiotics and improves upon diarrhea, bloating, gas, etc. You can find it at your pharmacy under the "Florastor" brand name, or at places like the Vitamin Shoppe or Whole Foods under other, less expensive brands like Jarrow. In our DS's case, while he did experience some GI issues early in the abx regimen, over time and with the help of the probiotics, his body adjusted and then there were no more issues in that regard. Hopefully you'll experience something similar.

Hitman -- In our DS's case, we found that glutamate dysregulation was definitely a culprit; not sure, frankly, whether it was a side effect of the immune dysfunction/PANDAs, or if it's more directly tied to DS's genetic code, methylation function, etc. At any rate, the NAC, which is readily accessible and inexpensive here in the States, made a big difference for him. It is also thought to be a "biofilm buster," so we credit it with also helping DS and the abx regimen to clear up lingering illness and inflammation in his sinuses. Prior to PANDAS treatment, DS had had constant upper respiratory and breathing issues, but the combination of the abx, NAC and histamine regulation at points, as well (during allergy season, during high stress) seems to have set all of that right on a more sustainable and permanent basis. Re. short term memory loss, we saw that also, and just hold onto the fact that it WILL resolve as your health returns. In fact, at one point, our DS said he sometimes felt like his grandpa, who suffered from Alzheimer's and couldn't hold on to a memory for more than a few seconds toward the end. DS was bewildered by how he couldn't remember if he'd brushed his teeth 10 minutes ago, but he could remember the vacation we took when he was 5 years old. Two supplements that are possibly helpful for that: taurine and zinc. In our experience, it takes longer and consistent application for the impacts of dietary supplementation to take root and be palpable, but they DO help! Glad to hear a little more positivity in your "voice" today and sending you cyber-strength and support! Do something you enjoy today, no matter what!

Hitman -- I'm so sorry you're going through this and in a situation where you feel so isolated and under-supported. You know the forum is here for you, but I realize that comes up short in the face of struggling to access efficacious treatment and other resources. It stinks. And I have to believe that it's likely even harder when -- not unlike a hearing person who suddenly, tragically loses their ability to hear -- you remember how you felt and succeeded when you were "functional," and now you've lost that ability to function well, "normally." I can say, "Hang in there!" I can say, things WILL get better. But it won't mean much to you unless you find a way to get some relief, to find at least incremental improvements in your day-to-day functionality. I know you're trying to access immunological treatment via Dr. K. and whatever other avenues you can find. I'm wondering if you've also tried other, more readily accessible responses to address/alleviate inflammation and distress? I can't recall if you've posted anything regarding your diet, supplements, etc., but here're a few things that come to mind so that you can focus on taking some positive steps now, even while the future of your medical/PANDAs treatment gets sorted out: OTC anti-inflammatories, like ibuprofen vitamin supplements that are anti-inflammatory and/or glutamate modulating (can help with OCD) such as Omega's (fish and/or evening primrose oil), turmeric, curcumin, coconut oil, n-acetylcysteine (NAC), Vitamin D, quercitin, etc. an anti-inflammatory diet probiotics that support your GI tract and help decrease inflammation there and support the production of serotonin and other neurotransmitters weed or CBD oil (both are legal here on a state-by-state basis -- not sure about the UK) exercise and/or meditation therapy I know with my DS and some other older (non-pediatric) sufferers I've been in touch with over the years, being older and more mature carries a bit of a different burden for you than it does for younger PANDAS/PANs victims; for the kids, their parents shoulder a lot of the stress and burden, but when you're older, those around you -- and you, yourself -- have a higher bar for you, your behavior and your functionality. Somehow, you're supposed to continue to function and look after yourself and your needs, even though your thinking is hopelessly disorganized and your fears and anxieties command an inordinate amount of your time and energy. All I can suggest is that you fight the tendency to focus on what it is you DON'T/CAN'T have at the moment, and take steps -- even just the tiniest and slowest of steps -- toward what you CAN do and CAN have. There's a very real tendency to fall into a state of hopelessness and helplessness, and then inertia and your OCD's tendency to amplify the fears and anxieties really kicks in and convinces you there's nothing you can do but feel horrid and lonely and crappy. But you can try and force yourself to do just one thing each day, maybe, that ignores and contradicts those tendencies, whether that's to take a brisk walk or make a therapy appointment or maybe try and return to a favored hobby or past-time that you've recently sacrificed at the feet of your illness: reading, writing (your posts here are very eloquent -- perhaps you have an inner novelist lurking about for an opportunity to break out?), gardening? Reclaim little pieces of your life, if you can, however small. And then celebrate that return to some functionality, however brief or small a glimpse. That'll give you something to build onto. And in the process of reclaiming little pieces of yourself and the moments that help you feel more like your real self, you may even find flashes of inspiration and creativity that can assist you further in pursuing your PANDAS/PANs treatment. I know it's a lot to ask of yourself. Again, my DS was fortunate to be younger (12) and have a life that was largely managed by his parents. But he still had demands made upon him, and we still set some expectations. Certainly, both were heavily reduced during the worst of his illness, but we didn't want him to entirely lose his grip on what real life looked like, what "normal" 12-year-olds were up to, what the outside world generally expected of a boy of his age, his intellect, his talents. We wanted him to always have goals, though we tried to set them as reasonably as we could for his current level of functionality. You, for the most part, have to do that for yourself. Not fair. Far from easy. But you can do it! I know you can! Wishing you all the best, and a giant, fighting spirit!

Em -- I can't claim to really know psychosis, nor do I have all the symptomology and/or definitional stuff at my disposal that you appear to have studied and grasped. But I can offer this observation. My DS's primary PANDAS presentation was OCD. When my DS's PANDAS was at its height, he definitely looked "psychotic" to us, and though he was young and didn't have the academic background regarding psychosis that you appear to have, his descriptions of how he was feeling and what was "bothering him" definitely fit in with your description. He appeared to be literally driven "crazy" by the OCD to the extent that it didn't even resemble OCD anymore because it was so "out there," so broken with reality, that there was no getting through to him. Therapeutic techniques that had worked for the previous 6 years didn't work anymore because they couldn't break through his new, self-created reality. He had an answer, an excuse, a rationalization for everything that was absurd, but it was very real to him. Abx treatment brought him back to a place where the therapeutic techniques could break through that bizarre fog again, and the "crazy" abated until we were left with a more classic presentation of OCD again. But even now, particularly under stress, my DS's lingering OCD can take on an "unreal" quality in terms of the way he will rationalize it or become subservient to it -- almost like he needs the unrealistic rationalization of it so that he can continue to engage in the ritual or compulsion without anyone -- his parents, his therapist, his friends -- trying to break through that "reality wall" and compel him to cease the behavior. I guess what I'm wondering, again, predicated only upon this very close-up and personal experience, is, can this "psychosis" actually be a complex and sophisticated extension of your OCD, your brain attempting to protect you from the naysayers and other manifestations of reality that could break in and challenge your sense of appropriate behavior? I know my DS and some other folks who contend with OCD that I know can be very analytical -- sometimes excessively (obsessively?) so -- particularly in an attempt to understand and/or explain themselves. Finally, I would also agree with the others that you have nothing to lose by pursuing PANDAS/PANs treatment and see if it alleviates any of the problems you're currently contending with. I suspect we're only a decade or so away from the discovery or declaration of the fact that ALL mental illnesses have, at their root, some medical/physical genesis. So, irrespective of whether, definitionally, what you're suffering from is PANDAS/PANs or psychosis, what do you have to lose? Chances are there's some inflammation in the mix, at a minimum. I say go for it! All the best to you.

Like Jan251, I believe that if you look at the clinical diagnostic criteria for PANDAS or PANs, tics are included but not exclusive or required. That said, I think sometimes it can be difficult to distinguish what constitutes a "tic," particularly if it fails to take a classic form (head-jerking, etc.). My DS had an OCD diagnosis for years prior to a PANDAS diagnosis, so we had a "pre-programmed" awareness of all things that took the form, to our eyes, anyway, of obsessions and compulsions. But, frankly, it took discussions on this forum for me to realize that his tongue-clicking and his leg-dragging were also tics driven by the PANDAs inflammation. Frankly, I would think that any manifestation of a movement disorder -- assuming no other diagnosis or perhaps even attributable to some other diagnosis, since many technical diagnoses are really just a label assigned to a symptom set, but not an identification of the underlying cause -- could be a PANDAS/PANs symptom.

OCD and PANDAS Mama -- Our successful antibiotic was Augmentin XR. Regarding psych drugs, I agree with you completely in terms of working on the medical issues first as best you can. We, too, initially had a psych who was all to willing to increase SSRI doses, add other meds, change meds, etc. at all too rapid a pace; like you, we trusted him because he was supposed to have the education and experience. But I think some have either been at it way too long and are now just going through the motions, with a tendency to push whatever the pharm sales rep most recently dropped on them, or they just want to satisfy distressed parents who want SOMETHING that will help their kid be more functional or compliant or calm or all of the above. I truly shudder when I realize what we put my DS's brain through, with this quacky psych messing with his medications as though there would be no repercussions. Once we found PANDAS and started antibiotic treatment, we were able to find a psych who had some PANDAS knowledge, but more importantly, she was intellectually curious and kept up with ongoing research, etc. So she was far more thoughtful and cautious in terms of treating DS and introducing or changing meds. I realize that implementing psych meds during or even following PANDAS medical treatment may "muddy the waters" in terms of completely addressing and/or eliminating the underlying culprit, but we chose our path because our DS was older, had been dealing with all of this longer, and wanted his functionality back almost as much as we wanted it for him. So the psych meds were an important part of that for us. If you decide to return to that route at some point, I would just encourage you to not be shy in interviewing prospective psychs; make a list of pointed questions to go in with, and get some answers. And then you and DD be proactive and participatory in any treatment you undertake in the future, rather than just accepting that because they have a certificate on their wall, they have all the answers. Clearly, they don't. As my dad used to say, "They call it 'practicing medicine' because they're practicing on US!" All the best!

Hi, and welcome! My DS has a similar story to your DD's . . . OCD at age 6, started CBT and some ERP and it backed off for a while, OCD returned with a vengeance at age 8 and this time added low-dose SSRI to therapy which worked for several years, and then at age 12 became so dysfunctional no SSRI worked, wouldn't participate in therapy, etc. That's when we were finally able to get a PANDAs diagnosis and treatment (antibiotics). In our case, because his initial response to antibiotics was so positive, we were able to convince our doctor to continue to renew them, and in the end, he was on them for nearly 2 years, with improvements all along the way. We saw Dr. K. for a consultation and he recommended IVIG for us, also; Dr. K. believes that IVIG is the only true way to "reset" the immune system and stop the autoimmune onslaught behind the anxiety/OCD, and the NIMH (Dr. Swedo) has agreed with him. As you've probably seen here, there are those here who've had positive results with IVIG, and some who've not had palpable or lasting impacts, and I don't think anyone fully understands why the differences. In our case, our DS was responding so well to abx, we decided we'd hold off on IVIG until and unless his improvements ceased or we couldn't get them abx anymore. Not only did the IVIG seem like a more dramatic step, our DS didn't have any immune deficiencies, so we knew our insurance would not cover the treatment. A couple of things you noted I wanted to respond to, specifically: 1) as your DD has had breathing/sinus issues, have you ever had her sinus' "scoped"? There are a couple of families here on the forum who's sinus testing disclosed some cysts in the sinuses that were basically pockets of infection, more or less hanging out there and driving an unrelenting immune response which also reached the brain. Upon having the cysts removed, followed by a round of antibiotics, the child's behavior improved dramatically. We never went to the scoping for our DS, but he, too, had had sinus and breathing issues since he was 2 or 3. We think maybe the long course of abx was necessary in his case because of some infection hanging out in those sinuses that took a while to eliminate non-surgically, as his breathing and sinus issues improved along with his behavior symptoms, and he's not had any significant issues since PANDAs treatment. 2) You mention seeking Lyme testing. I would encourage you to address that before you decide upon IVIG as there have been some reports here by families that IVIG was ineffective or even problematic for them because their child had underlying Lyme and/or co-infections that they didn't know about before moving forward with IVIG. 3) While I do believe that you need to find appropriate medical treatment and perhaps SSRIs will not ever be a successful piece of your DD's health, my DS has continued to benefit from a low-dose SSRI for some occasional, lingering anxiety periods, and there have been other kids here for whom low-dose SSRI's have been helpful in conjunction with other tools. You might consider some genetic testing such as Genomind which focuses on genetic makeup and which psychiatric medications are likely to be effective or not based on one's genetics. And 3), you have a concern about "irreversible brain damage." As the parent of a kid who, like yours, went for many years unsuccessfully treated for an autoimmune response (strep was our culprit), I will tell you that I don't see any brain "damage," per se, but I do believe that my DS's "wiring" today was informed by his experiences all those years. He is now a healthy and happy 20-year-old, a scholarship student living away at college and growing mentally and emotionally on a daily basis. But he is still prone to some anxiety during stressful times, and his go-to response to that anxiety are some OCD behaviors. At this time, the anxiety and OCD are under control and so minor/sub-clinical that if you didn't know him extremely well, you'd have no idea. So, "damage"? I don't think so. But a part of who he is? Maybe. Perhaps he'll continue to mature and evolve past even these remaining behaviors as his mind and body health stay with him. Or he might always have these "tendencies" which, in addition to making him anxious at times, also make him conscientious, sensitive and empathetic toward others and their eccentricities. Hang in there, and all the best! All is NOT lost!

Yes, I've heard of this particular manifestation of OCD, and though my son never had compulsions or obsessions attached to just a single word, the other thoughts or fears that he would work very hard to avoid because they were, in and of themselves, somehow "bad," were overwhelming at times. And like Plum99 has said, they tended to shapeshift, also. If he was successful in working through and dismissing one, either via therapy or constant exposure exercise at home, quite often another, similar type of "taboo" would creep in to fill its place. I do think that some regular therapy with a psychologist or therapist well-versed in OCD can help you, though in my son's case, anyway, he needed some additional leverage, as well. I know you have a long history here on the forum (PANDAs, etc.), but I can't remember all the interventions you've tried in addition to antibiotic therapy, etc. In our case, once the abx had tackled the underlying infection, my DS's "residual OCD" had managed to become pretty well entrenched in the years he was coping without the benefit of a PANDAs diagnosis or treatment. So we found that an SSRI helped give him the additional leverage he needed to implement the tools and strategies that therapy provided for beating back the intrusive thoughts, etc. OCD brings to the table.

If you are willing and able to travel, why not actually schedule treatment with Dr. K.? While he has offices here in the states, I understand he also spends quite a bit of time in Europe, so perhaps there's somewhere within the EU you could also seek his care? If you are willing and able to pay for your care here in the states (I cannot think of any provisions under which you would not have to bear the full financial burden of treatment, especially since even many of us US citizens have had to pay out of pocket because our private insurance coverage does not recognize PANDAs as a valid diagnosis), I can't imagine that any of the specialists here would decline to treat you, though I am of the impression that Dr. K. has the most familiarity with "adult" PANDAs patients here, as opposed to pediatric ones. Perhaps some other folks here will speak up as to your options. Good luck!

While he was on abx, we wound up giving our DS close to 200 billion units of probiotics on a daily basis: a large count multi-flora formula by Renew Life, plus a Culturelle and a sach b (Florastor, but a less expensive version by Jarrow). We actually tried a little higher, but found that 200 bu seemed to be his "sweet spot," as more seemed to make him gassy. I'm guessing "how much" is right varies from person to person, and from abx to abx. I really like Culturelle and sach b, but I also think using a good quality multi-flora is a good call so you can keep as much beneficial bacteria going as possible. Since he's been off abx, he pretty much just takes a Culturelle every day. All the best!

Hey Alyssa -- I'm a little surprised that your psych has prescribed you a stimulant for your ADHD; were you prescribed this simultaneously with your OCD diagnosis and SSRI treatment, or did one diagnosis and treatment protocol come some time after the other? I ask because my DS has also been prescribed an SSRI and it is generally successful in helping him push back on the "residual" OCD he deals with from time to time, particularly in high stress periods. But there was also a period -- pretty much mid-PANDAS -- during which our psych at the time thought he also suffered from ADHD and wanted to try medication for it. However, he said quite specifically that simulant medications would only serve to increase the OCD, so we had to stay away from those. So I guess I'm wondering if you noticed any "uptick" in your OCD once you started the stimulant? Or if you were to stop the stimulant for a period, if you would notice a curbing of the OCD? There are a handful of non-stimulant ADHD medications available now, among them Intuniv and Straterra, so there are some other alternatives. In the end, in my DS's case, we discovered that he didn't really have ADHD; rather, that his distractedness and hyperactivity were a coping mechanism he'd developed to manage his obsessive thoughts/behaviors, especially in the school setting. So once we got the PANDAS and OCD under control, most of the ADHD behaviors evaporated. Also wondered if you'd heard of Acceptance and Commitment Therapy (ACT) which is growing in popularity for folks who suffer from anxiety disorders? Since you already practice mindfulness, I would think ACT would come pretty naturally to you and might help you deal effectively on a daily basis. Good luck!

Hitman -- Remind me where you're located...in the States? Somewhere abroad? I suspect that the dose of and composition of the amoxicillin you've been given is going to fall short in terms of desired mental impacts. Not only is the dosage low, but straight amoxicillin lacks the clavulanic acid adjunct that Augmentin includes (amoxicillin plus clav acid), and there has been research regarding the mental benefits of clav acid. Some PANDAS kids here (mine included) benefitted greatly from Augmentin 875 mg. or, even more so in our case, Augmentin XR which is an extended release formulation which comes in 1,000 mg. tablets. The advantage of the XR may be that it stays active in the system longer given that cellulose component which allows it to distribute more slowly, but if I recall correctly, the straight Augmentin 875 mg. contains a higher clav acid component, which might be why your consult suggested this. I know there's a thread or two here on the forum regarding this, so you might run a search for "clav acid" or something along those lines and see what you find. As for the gastro-intestinal impacts, yes, I think those will fade over time as your body adjusts to the addition of the abx. I would add a probiotic or two, if you haven't already, to help repopulate your gut flora and keep things from getting off-kilter there. This might be another vote for the XR formulation, too, since the entire dose won't hit your system at once. In terms of feeling the effects/impacts, it really does vary. My son was entirely non-functional at the point that we finally got access to abx for him, and he was markedly improved within 48 hours of his first dose; however, again, he started at such an incredibly low point, almost anything would have been an improvement at the time. In his case, return to full, up-to-speed cognitive function was a longer, slower process (sorry); the lift of the brain fog, improvement in executive functioning, return of clear "normal" speech patterns, etc. were a slow, gradual result. In his case, I attribute that to the duration of time for which he suffered before we got meaningful help and the need for the inflammation to be halted and reduced, healing of the blood brain barrier (BBB), etc. Why I think it likely that, given the right abx at the right dose, you are likely to "feel" better within a relatively short period of time (mood lifting), I suspect it will take a little longer for the brain fog to clear and your cognition to return in full. Sorry you're dealing with this but I wish you a speedy recovery!

Looking -- There have definitely been Canadian families on the forum over the years (I first came on-line here about 8 years ago), but I'm not sure which, if any, of those are still around. Most of the PANDAs "specialists" -- either pediatricians or immunologists who have made PANDAs a focus of their practices -- that I'm aware of are here in the U.S. Some of them offer Skype or phone consultations; you send your kid's medical records to them and then make an appointment. But those appointments are not, so far as I know, covered by any insurance companies, and they can be quite expensive. The pinned threads are here: Everything from doctors forum participants have found who were helpful (there might be a couple from Ontario in there, I'm not sure) to research to other primary topics. Effectiveness....in the case of PANDAs, we are generally measuring that by our kids' behavioral response, more so than by the standard medical measures. So, if your daughter's tics begin to fade or subside entirely in the next few days, then it would seem the amox/clav combination you've been given IS effective for her; you're correct that it may take a few days to make a visible impact. How long is this prescription? 10 days (typical for amox/clav here in the States). Here's the thing, though. I'm not a scientist or a doctor, so I'll direct you to the research papers for the specific facts on this, but like I said before, many of us have found that a single, standard course of antibiotics isn't enough for our kids, and that's not always because they continue to test positive for strep in a conventional way (throat swab). There seems to be something of a "delayed" effect whereby the strep antibodies continue to attack the basal ganglia for a period even after the kid no longer tests positive for strep, after the "active" infection has come and gone. Hence the "auto-immune" component of the PANDAS/PANs syndrome. So longer courses of antibiotics and even in some cases other immune-modulating therapies like IVIG, are what get our kids back to "normal." You might want to consider this publication; it was authored by a mom forum participant with a long and deep history of helping her two children through PANDAS/PANS who also has an impressive ability for digging into and retaining complex research on the topic. I think that this book will probably give you all the basic information you want/need to have in hand to marshal your daughter through treatment with your doctors in the most succinct, readable form currently available. You could also spend hours, days, weeks, months reading through topics here on the forum and learn a lot, but who has that kind of time?! https://latitudes.org/store/should-you-consider-pandas-ebook-pdf Sorry, but this is such a huge topic, truly, and I have next to no knowledge with regard to your available Canadian resources. Other than checking out those pinned threads, I would probably just drop "Canada" or "Canadian" into the search box on the forum and see what comes up there.

So sorry you're going through this, but welcome to the forum. I'm sure others with more recent experience will chime in, but given your pediatrician's response, I'm wondering if he/she is truly PANDAS-savvy? Did the doctor tell you why the switch in antibiotics when the Zithromax -- other than not fully eradicating the strep in 5 days -- seemed to be effective? When you say "tested positive for strep" still, after the Zithromax, was that by a throat swab culture, or was it a blood draw that tested for strep antibodies (titers)? It may be that the amoxicillin (even with the clavulanic acid -- I'm familiar with that being called Augmentin, but maybe yours is a difference synthicyzation of the same components, or you're outside the USA?) -- isn't the right antibiotic for your kid, or for the strain of strep you're dealing with. There are some threads at the top of this PANDAS forum -- pinned threads -- that include some basic background on PANDAS including research papers, etc. It might be worth going through a few of those and sharing them with your doctor. But in the end, most of us find that a short-term antibiotic course is insufficient for PANDAs and that a longer-term prescription (usually more than 10 days -- 30+ days) is needed. Unfortunately, depending on your child's immune system and some other factors the researchers are still trying to definitively figure out (genetics, etc.) why some interventions appear most effective for some, and others most effective for others. I wish you the best!

Hi! So sorry you're going through this, and I can appreciate your desire to connect with others who find themselves in a similar situation. That being said, though, I worry a little bit that were you to find someone going through similar challenges right now, that you might not find yourself even further distracted and perhaps indulge in the OCD even more, supported by the similar tendencies in your newfound fellow traveler? I say this as a mom of a college student who, having effectively "beat" PANDAS, continues to struggle now and again with anxiety and OCD, depending upon the circumstances. But much of his motivation for moving on and through the challenges that remain has been provided by his friends and relationships that are "normal," aka, not similarly anxiety or OCD-ridden. They help him distinguish between the thoughts that can plague him from time to time and the thoughts more typical of his peer group and encourage him to let things go more readily. As a result, he really doesn't want to spend time reliving his issues or dissecting and analyzing them. He just wants to continue moving forward toward a "normal" life. I also say this as a "support person" for a guy about your age who reached out to me several years ago via this forum, and we struck up a phone and email correspondence as he was struggling through finding effective treatment for his PANDAS/OCD and working through being functional in college, in his relationships, etc. I tried to be a support and sounding board for him, but I got the impression much of the time that I was just aiding and abetting his OCD, giving it something to cling to, because he could call me and further perseverate and mis-prioritize spending his time talking with me/complaining to me, rather than moving on with his life. But as his medical and mental treatment programs became more effective, he had less and less need for me, and now I've not heard from him for a few months . . . the longest stint of silence in quite some time. But in our last exchanges, I could tell he was feeling better, more capable, more "normal," and finding his way through some stressful situations without resorting to hefty OCD behaviors. You've said that you have good doctors, friends and a supportive family, etc. so I find myself wondering, is it that you don't want to somehow "burden" them with your troubles? Or is it that you think they just don't get what you're currently going through? Or is it that they, maybe similarly to our family, have been trained/educated to not aid and abet the OCD by catering to it, and therefore you sometimes feel a sort of rejection or lack of understanding because they don't support your fears and anxieties to the extent you feel they need to be supported? And, in terms of treatment, have you been recently checked for infections and/or inflammatory markers that could be contributing to the strength of the OCD now? Have you tried anti-inflammatory responses -- change in diet, supplements, etc.? Are your care providers supportive with respect to investigating these contributors and/or ruling them out or treating them? Do you see a therapist on a regular basis? From what we, and many others on this forum have experienced, effectively managing anxiety and OCD, even as an older, more experienced person, can be very difficult if not impossible if an underlying infectious or other immunological cause is not effectively dealt with; unfortunately, all the CBT and ERP, or friend or family support, in the world has a hard time taking effective hold if your body has lodged an assault against your brain. I can tell from your story that you are strong and persistent, great qualities for a person who faces these sorts of challenges. I feel certain you will get through this. I wish you all the best.

Like many other things, the whole streptococcus in probiotics issue is one for which there are multiple -- and sometimes contrary -- opinions. If you search here on the forum for "probiotics" threads, you'll see that some doctors have advised staying away from all strep strains, and others have argued that those strains, in those formats, have no negative impact. If you've been sensitive in the past, might it not be good to start out with a single strain probiotic, and then add another single-strain and so on, so that you can monitor what, if anything, seems to be problematic rather than helpful? I agree that a good-quality multi-strain probiotic is ideal, but it might be tough to discern the wheat from the chaff in your case. Many folks here have used Klaire products, and we like the Renew Life line. I would search this forum for the probiotics threads, however; there's a lot of information there, including research papers, personal experiences dating back some time among the participants here, etc. Good luck!

Mama4 -- If you've searched threads on the glutamate topic here, then you've probably seen plenty of my posts in that regard. We've never done Nutrahacker or any other gene testing to date with DS; we "lucked" and trialed-and-errored our way into effective treatment without it. My introduction to the glutamate connection with PANDAs and anxiety behaviors in particular came via research conducted by Dr. Rothstein with respect to glutamate modulation in anxiety disorders and the glutamate modulating properties of beta lactam antibiotics. I did some reading on a non-glutamate diet but honestly, given all the naturally occurring glutamates even in fruits and vegetables, it really did just appear to us, for our family and lifestyle at least, to be overly-restrictive. We do, however, eat preservative-free and largely gluten free (rice and quinoa pastas rather than wheat, next to no bread, etc.), and that has been a positive for all of us in terms of weight and general inflammatory issues. NAC has been a part of my entire family's supplement regimen for years now; DS takes the most given as he has the highest tendency toward anxiety, but DH and I also take it as it has also been studied for effectiveness in combatting flu and other respiratory illnesses. It has been good for all of us, but yes, there are some who don't respond well to it. Perhaps one or more of them will speak out and give you some information that will help you better determine NAC's suitability for your DS. I, personally, am convinced that glutamate immodulation is a significant player in my DS's situation, though I realize there are a number of more primary culprits for others. All the best to you as you work out the best path forward for your family. I'm sure you'll find it.

My son's official diagnosis for his 504 plan was obsessive compulsive disorder (OCD), as we were not successful in getting a PANDAS dx until many years later. By the time they implemented the IEP, we added our freshly minted PANDAS dx to the paperwork, but I let the OCD primary label stand. I know many families would not be comfortable with that and would have concerns that PANDAS issues and symptoms might get lost in the fray. Plus the OCD label is decidedly "mental" as compared to a PANDAS dx which would, hopefully, be "medical," though since it still is not in the DSMV, I'm not sure how that might impact the legal issues surrounding the IEP paperwork. In the end, the PANDAS stuff didn't get lost in the shuffle in our case, and we were okay with the primary focus lying on the behavior set and how it might impact DS in the school environment. We were not actually asked for any additional documentation or medical files; they did request permission to speak with our DS's psych and therapist, which we gave. In your case, they may ask for access to your diagnosing physician. But I wouldn't think you'd need to give them carte blanche access to your DS's medical files. Another tidbit I forgot to mention last time regarding IEP's that, in our case, weighed toward our agreeing to it when we did (pre-high school): in our area, anyway, the older a kid gets, the harder it is to apply for and receive an IEP. Now, hopefully, your kid won't even need one by the time he gets to high school; with IEPs, if you don't need/use accommodations over time, they generally get stripped from the plan due to your kid's "demonstrated progress." But if, like some of our kids, he winds up doing the "PANS dance" for a few years and needs the accommodations periodically over the next few/several years, getting that IEP in place now might prove to be advantageous. I guess, particularly in competitive school districts, some parents will lobby to get their high schoolers IEP plans for -- and pay neuropsych testing companies thousands of dollars for testing to support -- dx's like ADD, ADHD, processing delays, etc. so that they can qualify for advantageous accommodations (extra time, separate testing environment, etc.) for college entrance exams (ACT, SAT). So the school districts have gotten much stingier with these requests and have erred on the side of ruling against, rather than for, such applications.