MomWithOCDSon

Ours was one of the rare families here on the forum who were able to get some PANDAS/PANs help from our regular pediatrician, but I will tell you that, in our experience, not only can they feel overwhelmed by what they don't know, when you start hurling the "kitchen sink" in their direction, bringing up everything from mold to lyme to MTHFR, etc., and throw in "I read it online" to boot, most mainstream doctors are going to start either looking at you cross-eyed or begin to roll their eyes when they see you coming and dismiss even your most legitimate concerns/ideas as those of a desperate mom who just can't bring herself to admit the fact that her kid(s) is autistic/bipolar/developmentally delayed/depressed -- you name it. I get the temptation because I did the same thing initially, and I know it's hard, and all this just sort of "happened," but you'll probably help your kids and yourself best if you slow your roll at least just a little bit. Getting to a specialist is your best, most efficient course of action because they'll be knowledgeable themselves about "next steps," and it won't all be up to you. Not that mold or MTHFR aren't part of the puzzle you'll need to sort out, but your DD's positive response to abx would seem to suggest an infection, and that's a good place to start, I would think. A PANDAS/PANs specialist is likely to order blood work (a full immune panel); I'm not sure if the Cunningham panel is currently readily available, but someone else here on the panel can likely speak to that. As for MTHFR, you will probably need a good integrative or DAN! physician to help you sort that out, as not even PANDAs specialists, so far as I know, are really well-versed in that. Testing-wise, you could order the 23-and-Me genetic (I think you called it "chromosome") testing on-line, but you'll need help interpreting the results. You can search "23-and-me" and/or "MTHFR" here on the forum and find a lot of information, primarily via our member LLM, who's developed something of a specialty along those lines. Finally, if in the meantime -- or for the longer term, due to accessibility and other considerations -- you'd like to try and keep working with this willing-but-"newbie" pediatrician, I would do what I could to help him get up to speed. I made a hefty binder for our pediatrician in the beginning of our journey, with every piece of literature and research I could source from here on the forum and elsewhere. Throughout various topics threads here (I would probably start with the pinned threads at the top of the forum) you can find links to both peer-reviewed research papers and less formal documentation that could help your local doctor. I also gave mine a copy of "Saving Sammy." And pandasnetwork.org is another excellent resource for information and research for your or your caregivers. All the best to you!

So sorry, Beerae. I can "hear" the frustration and demoralization in your words. This stinks. We were on abx for about two years ourselves, and all I can offer is that having done that, now five years later, doesn't appear to have had any lasting ill effects on DS. He still responds when put on abx for different issues (wisdom teeth removal, ear infection), and his gut seems healthy and normal. I know you've explored other supports and avenues, and I don't know what you're doing with your DD at this point beside abx, but in the end, while abx brought our DS back from the brink and started the turn-around and healing, it required other components to bring him back to his fully functional, happy self. Time was definitely a factor, too. And he was older than your DD when the worst of this hit him (12), so I'm thinking hormones may have played a role, as well, and your DD, unfortunately, may still have that to work through. But don't give up, and even though you may sometimes feel unqualified (you're not the doctor) to make the treatment decisions, try to trust your gut, your experience, and your unique knowledge of your DD. Unfortunately, at this point in time, NOBODY has all the answers (doctors, researchers or parents) for all sufferers or situations, so we have no choice but to engage in some careful but "edgy" responses. Treat yourself a little this evening, recharge, and know that you'll find answers and it'll get better.

I agree with LLM that methylation testing could help set aside a lot of the trial and error and help you zero in on supplements and therapies that are most appropriate for your kids, as opposed to the "throw the spaghetti at the wall approach" that many of us initially used with our kids, due to ignorance as much as anything else. Some of us "got lucky" and happened across some helpful interventions. While you're looking into and/or getting testing underway, however, I think many of us here would generally advocate anti-inflammatory strategies, from diet to supplements. Diet-wise, that generally translates to decreasing carbs/wheat/gluten and dairy, along with artificial ingredients to the extent possible. Anti-inflammatory supplements and/or foods such as pineapple (quercitin), curcumin (cumin), turmeric and certain Omega's (coconut oil, evening primrose oil, fish oil -- though some kids don't respond well to fish oil for some reason) can help. Ultimately, the list of supplements and vitamins is quite long, but not every kid/situation responds well to what another responds well to (perhaps due to the methylation issues LLM has referenced?), so, unfortunately, I don't think you can take anyone else's shopping list, necessarily, and abide by it for maximum results. There is another, very basic resource that we found very helpful in deciding which vitamins/supplements might be most beneficial for our DS and, fortunately, in our case, it proved to be quite accurate: http://www.nutritional-healing.com.au/content/articles-content.php?heading=Major%20Mental%20Illness%20Biochemical%20Subtypes From this matrix, it was pretty clear that our DS was under-methylated/high histamine, and potentially pylouric, as well, and so we proceeded with zinc and B6, along with anti-histamines (quercitin, as well as OTC anti-histamines on occasion). All the best to you!

If your DD continues to do well during the day and displays improvements generally, my bet is that she is, in fact, improving and getting healthier. Unfortunately, anxiety and OCD are insidiously good at exploiting the "cracks" in one's armour and insecurities. Since many kids tend to be at least a little fearful of the dark, and more physically and mentally tired at the end of the day, it makes sense to me that your DD's anxiety/OCD has a harder time taking a back seat once the sun goes down or it's time to go to bed (lights out, in a space separated from you, etc.). When my DS was younger and otherwise doing quite well, bedtime would be when he would lay awake long after we'd "put him to bed," calling out to us for reassurances on various things that never bothered him during the daylight hours. Since your DD is otherwise doing quite well, my guess is that she could handle some CBT/ERP approaches to these lingering behaviors as, otherwise, they might become habitual and harder to set aside on a more permanent basis. Not that she'll embrace a therapeutic response, necessarily, but if employed consistently and persistently, you should see each OCD behavior gradually fade away. You don't say what your DD's nighttime OCD behaviors are exactly, but for instance: when our DS would insist he needed to make numerous "confessions" from his bed at night and get our re-assurances that all was well, that he hadn't behaved badly, etc., we started giving him a limit as to how many things we would respond to, and shrinking that limit each night. So at first, say, we'd respond/re-assure a maximum of 5 times, and then a night or two later, we'd only respond 4 times, then down to 3, down to 1, and then zero. He didn't like it. He'd keep calling out, and the first few times, he melted down entirely. But after about a week, that behavior had gone away completely. All the best!

So sorry you're going through this, and that you're being so handily dismissed by medical practitioners who should care more, should know better. She's not too young. She definitely could have PANDAS/PANs. Probably best to go to a doctor who is familiar with PANDAS/PANs and will listen to your full history and all of the clinical signs, in addition to providing testing which will help identify the culprit(s)/infection(s) behind your daughter's recent decline. I don't know where you are geographically, and/or what your options are for traveling to a doctor. But on the pinned threads topic line at the top of this forum, you'll find a list of "doctors who've helped us," with names of practitioners across the country. Some of the better known ones are located in New England (NY/NJ/Conn), Florida and Illinois (Chicago area), but there are others across the country, too. Hang in there. You can and will get some answers. Unfortunately, you might have to "dig" for them a little/lot more than you would if your daughter displayed as many medical signs as she does behavioral ones. It's one of the major curses of this danged illness. Godspeed!

Ahhhh! Thanks, NancyD and Gpookie. I had LDI and low-dose IVIG conflated in my mind up to this point . . . did not realize they were two entirely different interventions. Well now I'm wondering about LDI for the primary identified PANDAs/PANs "nasties." I guess I should go back to the front of the forum and search "LDI" for threads, but I'm wondering, generally: a) how many PANDAs/PANs practitioners use LDI as a typical care protocol (given as you mostly hear about IVIG, abx and steroids); is it primarily used in conjunction with other treatments (like GPookie's IVIG)?; c) how long is this particular course of treatment/therapy?; d) with what regularity is it undertaken?; and, maybe most importantly, e) has anyone seen it have a lasting, curative effect? Thanks!

NancyD -- I thought low-dose immunotherapy was introducing donor antibodies to help a system fight issues that its own immune response is sub-par with respect to. That's why this appeared to me to be a different type of intervention . . . actually introducing the proteins that induce the immune response and "training" it that the proteins are not invaders, not foes. Do I have it all wrong?

This just came across my FB feed today, and I thought it was interesting: http://medicures.org/british-researchers-may-have-just-found-the-cure-for-multiple-sclerosis/ By synthesizing proteins from the sheaths in a lab and then injecting them into the blood stream at increasing doses, the body begins to learn that they are safe and no longer attacks them. This type of therapy has already been used in treating some allergies, a treatment that is called allgergic desensitisation, but its only recently that scientists have thought it had potential to be used elsewhere. In autoimmune diseases the immune systems sees little protein fragments in your own tissue as foreign invaders and starts attacking them. What we have found is that by synthesizing those proteins in a soluble form we can desensitize the immune system by giving an escalating dose. These findings have important implications for the many patients suffering from autoimmune conditions that are currently difficult to treat, he added. Another option for PANDAs treatment in the offing, perhaps?

darling787 -- I'm so sorry for what you're going through; I can imagine how frustrating it is. Just for the sake of perspective and empathy, I'm pretty sure I had PANDAS as a kid/teenager, but it just wasn't a discernible condition at that time. I NEVER had strep throat in the classic sense; actually, I was rarely sick at all. But my sister had strep CONSTANTLY, and I was, of course, exposed over and over again. And I was a behavioral handful, predominantly due to (I now can look back and see) being highly anxious; I was therefore always melting down, always trying to control every situation so that I would feel less anxious about it, etc. I see now that while my throat wasn't reacting to the strep or the immune response it incited, my brain was. I did not have a classic case of strep throat until I was well into my 30's and I'd had my son; he brought it home from school and even though HE, like me as a kid, did not respond in a classically symptomatic way, this time, as an adult I did. Horribly sore throat, white spots on my tonsils, incredible swelling that had me spitting my own saliva into a cup because I couldn't bare to swallow it, etc. I was shocked the first time it happened, and a little more prepared the second time. By the third time, I could see it coming a mile off. (Now, if I'd only known what all those strep exposures were doing to my DS at the time . . . but that's another story, sort of). Long story short, I would go after the antibiotics, and I would go after them hard, as hard as my body could take them. If the azith has horrid side effects for you, there are others that have been successful against strep/PANDAS to try. I have read anecdotal accounts of penicillin failing to work, but I've also read accounts of success with penicillin. But I do think that it may be less effective than some of the other abx that are second or third generations, as compared to pen. My son and I both responded very well to Augmentin XR, for instance. Is this an option for you? The extended release version puts the drug to work in your body for a longer period per dose, and the clavulanic acid component is thought to have a number of beneficial properties, both medically and mentally. You might look into it. All the best!

Wow! So sorry to hear what you're going through! Please forgive my ignorance, but this dramatic "seizure tic" that you describe . . . have you pursued a second opinion as to whether it's actually a seizure versus a tic? This seems to be a very complex tic, if that is "all" it is, and if it is so uncontrollable that it occurs when she's asleep, swimming, etc. and endangers her physically (concussions, etc.), to an untrained layperson like myself, it sounds more like an actual seizure than a tic. I know kids that have seizure disorder diagnoses, and their seizures have a lot of similarity with this one of your daughters. On the flip side, though I don't have a whole lot of experience with TS itself, I've been here on the PANDAS/PANs forum for several years now, and I've never seen a "tic" described in a similar manner as what you're describing. Has your daughter ever been prescribed an anti-seizure medication such as trileptal or lamictal, even if only on a trial basis? Some of us with PANDAS kids have been given prescriptions for lamictal "off-label" because our kids weren't technically diagnosed with a seizure disorder but because it is beneficial on other fronts (modulates brain glutamate, an excess of which can contribute to behavioral disturbances, including OCD). In short, given as your daughter's troubles began on the heels of a discernible medical illness, I think it is highly possible PANDAS/PANs is at issue here. Did the pediatrician that your daughter saw -- though dismissive -- order any blood work at all? Have you had immune panels done, or the Cunningham panel? If your regular pediatrician is of no help in this regard, will your psychiatrist order the blood work on your behalf? When you say she was "negative for strep," do you mean by throat swab? My son was ALWAYS negative for strep by throat swab; it wasn't until we had his strep titers tested that we realized he DID have strep -- he was just classically asymptomatic to it. That being said, it doesn't have to be strep that sets off this condition, either; it could be myco p, lyme, Epstein barr, any number of other microbes that set off an immune response/antibodies that get past the blood brain barrier (BBB) and wreak havoc in the brain. I would follow your instincts and continue to pursue some real answers that might, in the end, provide your daughter some relief. If you haven't already, you might drop a similar post regarding this tic over on the TS board here, too, and see if anyone who participates there can share some similar experiences and/or successful interventions with you. All the best.

I don't know the extent to which lamictal dosing is tied to age or weight (I know SSRIs aren't weight-dependent, but this is a different class of drug), but he's 195 lbs. and currently takes 100 mgs. of XR each morning. My recollection is that he started on something like 25 mgs. (he was younger and lighter at the time), and we saw positive impacts pretty much immediately -- within a couple of days. The mood swings were less dramatic, the meltdowns subsided. But his personality otherwise was unaffected, which was a pleasant difference between the lamictal and some of the other interventions we'd tried (Seroquel, Risperdal, etc.). Lamictal has one rare but potentially harsh side effect known as Stevens-Johnson Syndrome, a skin disorder that, untreated, can be very serious. So our psych wanted to go very low and slow with dosing. It was at least 4 weeks between any dosage increases.

He's been taking it for about 3 years now and yes, continuously. We'll likely reassess in the next 12 months or so, given how well he's been doing and the fact that we've now made it through the going-away-to-college transition. But I think we're all still so relieved that he's happy and healthy, we're a little loathe to rock the boat, and his doctors have thus far agreed on that point.

We are grateful to the support that low-dose psych meds have given our teenage DS (now 19). One in particular (lamictal) was a real turning point in a sustained behavioral and mood recovery. IMHO, you're not "succumbing" to some "less-than" solution; you're extending your options, reaching for stability, functionality, even happiness, on the horizon. All the best to you!

There was another parent on this forum up until a couple of years ago, actually, maybe a couple of them, who had experience with some sort of sinus cyst of strep that was found during a sinus scope procedure. They had it removed, and then the antibiotic treatment that followed seemed to help the child back to recovery. I think it was Kimballout, maybe? I would search for that user name, or search for "sinus" here on the forum, and you should hit some threads in this regard. My DS, though classically asymptomatic for strep, was plagued with upper respiratory problems for years . . . chronic sinusitis, ear infections, general stuffiness, allergies, etc. We never had him scoped, but a lengthy regimen of abx (Augmentin XR) and n-acetylcystein (NAC) seems to have finally cleared all that up, along with helping him beat the behavioral impacts of PANDAS. There is research regarding NAC's properties as a "biofilm buster," as well as some research that indicates that some infections, including strep, can "hide out" in colonies protected by biofilms, making it difficult for abx and other interventions to fully eradicate it. So we think maybe we sort of "lucked into" a combination that helped us get at at least one of DS's issues without going through sinus surgery, etc. Good luck!

I hear you, Beerae! Tired, tired, tired! All I know about "residual" OCD or behaviors comes from our personal experience. I know how you feel, though, definitely. You read and hear about other families where the kids come away from treatment "back to baseline" or "100%" or "completely OCD-free," despite having been deeply and thoroughly dysfunctional just prior, and you wonder if maybe you're doing something wrong, or if your kid is somehow a "rarity" in this regard because they're NOT 100% "cured." Please understand I don't wish relapse or exacerbation on ANYONE, but I can't help but wonder if some of these folks only think they've dealt with the monster for the last time, but it is still lurking. Again, for myself, I wind up feeling a little cynical about it. From our experience, I've come to believe that this PANDAs/PANs stuff is a mix of genetics and "invader," and so if you're genetically prone to anxiety or OCD or tics -- whether that's because your methylation cycle is inhibited by one gene mutation or another, or because your whole family has a tendency toward high histamine, or if your body doesn't regulate dopamine or serotonin like a "normal" person -- then successfully ejecting the invader and quelling the autoimmune cascade isn't necessarily going to "cure" you. You're still likely to need some tools -- if not permanently, at least periodically -- to help you deal with levels of anxiety or other behaviors that can creep in, whether inflammation inspired or genetically "wired." My DS still deals with anxiety and OCD from time to time, and it doesn't appear to be microbe, allergy or specifically inflammation related. Generally, I've attributed that to the fact that he was diagnosed/misdiagnosed with OCD at age 6, and we weren't able to document the strep link or get PANDAS treatment until age 12. So he'd had 6 years to develop behaviors, "habits," based on OCD and anxiety as coping mechanisms, even though he was in therapy off and on all those years, as well, and took a low-dose SSRI for a portion of that time, too. Therapy has definitely stood him in good stead for a number of reasons: it helped both him and us (his parents) separate the behaviors from the person so that his self-esteem remained relatively intact; it gave us all tools for confronting the beast when it would rear its head again (and until recently, it did, though never again to the magnitude it had before PANDAs treatment); it helped him to see that these behaviors were just that, behaviors, and not really a "normal person's way" of confronting/dealing with situations or obstacles -- once identified, as he matured and got healthier all the way around, he set about tackling them, one after the other, to mindfully eradicate them. My DS is naturally high in histamine, and he has environmental allergies. In short, his body is almost always leaning toward being in an inflammatory state. So whatever's behind the inflammation, yes, I think it has a lot to do with the "flares" or increase in behaviors. So that's what we fight/guard against now, for the most part. Adequate sleep, anti-inflammatory supplements, some medications which have either anti-histamine properties or glutamate-modulating properties or both, and the bag of therapy tools. Knock on wood, he's been "well" since he was about 16, but in terms of dealing with anxiety and OCD impulses, he's continued to improve, year after year. I think his mind has matured, I think his immune system has matured, I think we're managing inflammation, and I think he's decided for himself that putting effort toward doing the things he wants to do, rather than time-consuming things the OCD/anxiety used to convince him to do, is well worth it in the end. In the end, I'm a "spaghetti at the wall" kind of girl . I'm going to throw everything I can source at a problem, see what "sticks," and then continue to stick with that until it doesn't work anymore. From my time here on the forum, attending conferences, etc., I'm come to think that maybe there's an age-of-onset/rapidity of treatment relationship here. The younger the condition is properly identified and treated, the more likely you are to achieve a "100%," and maintain it, because the brain isn't working around the condition/inflammation, building coping mechanisms (behaviors), etc., especially if there isn't a genetic tendency toward inflammation or anxiety (or both). With a kid like mine (and yours?) though, it may take longer, and it may require a wider variety of interventions, to get them to the same place as that "luckier" demographic? I know you won't give up, and you're resourceful. You guys will get through this. If you can, try to take some information from the success stories and focus a little less on the fact that they may have gotten to where you want to be, and faster. We're all going to get there, eventually, even when it doesn't seem like it!

I'm so sorry, Beerea! I know you've been hanging in there for a while, and you'll find the strength to hold on yet longer now. I can totally relate to the envy/frustration over the "10 days of abx and done!" stories; happy for them, but it only stokes our own self-pity and frustration. And for me, it stoked cynicism, too. What do they say? "Misery loves company?" Not really, but it does help to know you're not alone. And for every one of those "instant success stories," there are at least 5 stories here on the forum of folks/families who have to continue to keep up the vigilance against this PANDAS/PANS beast. YOU ARE NOT ALONE! I know you've been around the block on this a few times, so I don't mean to insult you by making suggestions, but: 1) have you tried a different abx besides Bactrim? Maybe its not fighting whatever your DD is fighting currently? 2) did you pull the Bactrim all at once, or did you wean her off of it gradually? Our DS always snapped back like rubber-band the first 3 or 4 times we tried to pull him off the abx (Augmentin XR in our case), so we finally left him on it for nearly 2 years straight and then weaned him off, very slowly (over the course of about 3 months). We saw a few backward steps now and then behaviorally as we were going through the weaning process, but then we would just hold firm on the dosage for a little longer, and the behaviors would settle down again. I hope you find some supports locally that you're seeking; I know this sucks, and it can suck the life out of you over time, too. Take care of yourself, and I'm wishing you some good days during what remains of the summer so that you can enjoy yourself and your kiddos!

Hi! Sorry about what you're going through, but having officially started the PANDAS journey ourselves relatively late (in terms of age -- DS was 12 at the time), I can certainly relate to your story. Yes, I think it's entirely possible your DS has PANDAS . . . and has had PANDAS for some time, but because he was originally asymptomatic in a classic sense (fever, sore throat, etc.), no one knew. That was what happened with us: repeated exposures to strep and behavioral consequences, but nothing physical/medical. So no one put the pieces together for many years. 1. Regarding sudden onset, yes, that's the classic definition. But in cases like ours which have gone undiagnosed for a lengthy period, it can be hard to trace memory back to that first explosion of behaviors, and you may not be able to tie it temporally with any strep or other (viral) illness or exposure, either. But Dr. Susan Swedo (the NIMH original researcher who "discovered" PANDAS and continues to research and advocate for PANDAS has more recently noted that there can be other measures with respect to subsequent exacerbations or events AFTER the initial "sudden" onset event, such as a 7-8 point increase in the Yale-Bocs score (OCD test -- available on-line). 2. Yes! There are many, many families, doctors and researchers now who would argue that the "P" for "pediatric" in the PANDAS acronym is a misnomer, that this auto-immune condition can and does apply to adolescents and even adults. And there is also acknowledgement now that while strep may have caused the initial "immune insult" in many cases, once that autoimmune "cascade" has been triggered, other immune events, such as viruses, allergies, etc. can trigger a fresh exacerbation. 3. Yes, certainly the re-awakening of microbes as the weather warms up could contribute, as could other environmental factors. Does your DS have any standard environmental allergies (pollen, mold)? If so, that can make things more tenuous in the spring, also. 4. Sorry, no experience with this med, but there was another recent thread specific to Ativan; you might try searching the forum by keyword and see what others' experiences have been in that regard. 5. As TMom indicated above, catching titers at the precisely right time can be tricky. I agree with the antibiotic 30-day trial. 6. Knock on wood, but I consider my DS a success story. It wasn't instantaneous or overnight, and he still uses tools he learned in therapy and other supports (meds and supplements) because he is prone to anxiety/OCD, but he went from an entirely dysfunctional kid at 12 to a very successful, happy college sophomore at 19. It's a long story, but finally getting a PANDAS dx and intervention (in our case, Augmentin XR) was the turning point after several years of off/on anxiety and OCD that spun completely out of control with a strep exposure at age 12. 7. Yes, there is TONS of research out now, though this continues to be an emerging field of medicine, and we're still not entirely out of the woods in terms of a contingent of "professionals" who insist on attaching the terms "rare" and "controversial" to a PANDAS diagnosis. In addition to the Pandas Network web site TMom directed you to, I would take a look at the pinned threads at the top of this forum. There you'll find symptom charts, some research papers, etc. Most of us have found it very useful to maintain a journal of sorts with respect to our kids so that we can track temporal relationships between events, behaviors, etc. Glad you have an appointment with an expert! All the best to you! Nancy

Not to hijack the thread, but with regard to a test that helps a physician or psychiatrist determine what medications, if any, will suit a person, our psych told us about a company called Genomind. We did not use it, as (knock on wood) there wasn't any need for us at the time, but apparently this company works ONLY with credentialed professionals, so a layperson would not be able to order the testing directly; it would have to be ordered by your doctor. But my understanding is that the costs for Genomind are considerably less than the $1700 noted above; something like $350/test, I believe? I'm not advocating, mind you; just passing on some more information. https://genomind.com/

We never tried Ativan, but similar to TXNinjaMom, our experience with Seroquel was brief and not great. We only tried it once, during DS's height of anxiety, when he couldn't do anything without melting down because every situation or undertaking sent him over the edge, into panic. On a very low dose, Seroquel did nothing, and his anxiety continued to rage. On a higher dose, it put him to sleep. There was no in-between. If your DS and/or your family just needs some down time, some opportunity to be separated from his OCD and/or anxiety for a short period, then maybe something like Seroquel is worth a try. The problem I have with a drug like that, though, is that, once it wears off, the anxiety and OCD are just as virulent and high as they were before the drug went in, at least it was in our case. It didn't do anything to "assist" or alter his chemistry so that the anxiety was more manageable, or so that he was in a better state to manage the next round of high anxiety. In our experience, there are better pharmalogical tools for those purposes than Seroquel. Good luck!

Our DS did not have that reaction to lamictal or dosage changes, though he did experience some "valleys" as the dosage was wearing off during the day. We eventually went to the XR version, which he took just once each day, and that seemed to serve him well.

Also, in terms of the abx and their impacts . . . research is mounting that it is likely not all about killing off infection. You've seen the posts/research about minocycline and OCD? And beta lactam abx (which Augmentin falls in that class) are thought to have glutamate-modulating properties, which can be an issue in some behavior sets (anxiety, OCD, etc.). I also recall having read some research years ago about a class of abx being distinctly anti-inflammatory (cephalasporins, maybe?). And then there's the clavulanic acid that's in Augmentin, which is thought to have anti-depressive and other characteristics, all on it's own. So while there may still be some infection lurking that the abx are treating, it may be that they are assisting other issues, as well. It is SO frustrating because even the best docs can't know all of the pieces at this point . . . the research continues. We're each sort of forced to put the puzzle pieces together ourselves as best we can and then protect them like Mama Bears once we've found the best of what works the best.

So sorry you're going through this. I know it is frustrating and even demoralizing at times, for both you and your DS. From everything I hear and read, Dr. L. is great at this PANDAS thing, but she is also incredibly booked up and that can inhibit response time and that sense of urgency each of us parents has, but I'm guessing no PANDAS practitioner can afford. If you've seen anything about my DS's story, he was similar to your DS . . . suffering for years before we finally got a PANDAS diagnosis and intervention at age 12. In our case, it was long-term abx rather than IVIG that did the trick. Like you, I didn't necessarily know what "base line" was, and I'm still not certain that I do. But I do know what functional looks like as opposed to the dysfunctional state he fell into at age 12. And I'm very blessed to say that now I also know what "happy" looks like, thanks to his healing and his current state. Unfortunately, in our case, it was a journey of several years, rather than several months. Two years of abx and therapy, followed by slow and steady improvements over the next few years, and he's about as close to "normal" as I can fathom he can be, as compared to my friends' kids, his college classmates, etc. Try to hang in there. I agree with LLM regarding anti-inflammatory measures; to this day, my DS maintains an anti-inflammatory diet and takes anti-inflammatory supplements. And if you haven't tried abx therapy, it might be worth trying, as well. All the best to you.

A few of us have discussed the vagus nerve before. This popped up in my FB feed this morning. http://mentalfloss.com/article/65710/9-nervy-facts-about-vagus-nerve

Yes, Beerae, it WILL be over, one day. It truly will. Never fast enough, or solidly enough for any of us, but it will. And then it'll take you a while to realize . . . to BELIEVE . . . that it actually is over at that point! I don't know if it's because our kids' bodies, minds and immune systems are still maturing, I don't know if it's because they're constantly subject to new assaults by various microbes, allergens, etc., or if hormones tied to impending or full-scale puberty are a factor, but I do believe your DD will come out the other side of this. Unfortunately, for us, ages 12 - 13 were particularly rough, and then, slowly but surely, each year thereafter got better and better with respect to DS's ability to weather the storms, bounce back after a fresh strep exposure, etc. By 16, he was pretty much 100% on the other (good) side, but even then, PTSD had us walking on eggshells at times. Hang in there, and hang onto the knowledge that you're doing all the right things, and you'll make it through. Our kids are more resilient than we give them credit for, sometimes . . . if only us more "mature" folks can hold on and share in some of that! Take care!

Did you check the "Doctors Who Have Helped Us" in the pinned threads at the top of this forum? Here's a link: http://latitudes.org/forums/index.php?showtopic=5023 We're half-way across the country so we've never personally consulted with Dr. Bock, but I have heard him speak at conferences, had a brief one-on-one chat with him, and read his book, "Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies," and he is VERY impressive. I also had the opportunity to share lunch and a long conversation with a family who's son Dr. Bock treats, and they had nothing but great things to say about him and about how successful his care protocols have been. I know there are several other doctors in the NY/NJ area that are well known in PANDAS circles (Dr. Triffeliti, Dr. Nicolaides, etc.), but, if you run a search here on the forum for threads regarding some of these docs, there seems to be some concensus that they can be a bit overwhelmed and hard to get in touch with as a result. Meanwhile, I've not heard those complaints regarding Dr. Bock, and I know his entire practice -- including a well-respected partner -- is based on integrative medicine for children. Seems to me you've got a good lead there. All the best!