MomWithOCDSon

It is a very tall order, keeping your own sanity and your adult relationships intact through the stress of a sick kid. Here's what we tried to do (not always successfully) to keep it together . . . literally and figuratively. Take advantage of even those brief time periods when you and your spouse can get away by yourselves, even if it's a trip to the grocery store or a cup of coffee down the street, or maybe even sitting on the patio at the end of the night, once your DD is tucked in. And even if you're not always on the same page with respect to your DD's care trajectory or options, just re-affirm your commitment to get through this period together, whatever it takes. If things are too difficult for any real time away from home together, then at least make sure that each of you gets some time for yourselves, alone and doing something that is rejuvenating for you, whether that's 9 holes of golf or a mani-pedi or a drink with friends. We found that just doing something "normal" and "fun" once in a while helped refresh us for the "PANDAs fight" back at home. And finally, try holding on to the knowledge that this is not forever, however protracted the battle may have been to this point and however difficult it is to actually see a light at the end of the tunnel as of today. Many of us battle for years, but healing does occur, the heat of the battle does lessen, and you will get your life back . . . perhaps not exactly the same, but good and rich and fulfilling nonetheless. Hang in there!

I personally think that if you can give him a semester's worth of healing time . . . and a lower-pressure academic environment in which to get tackle some, if not all, the age-appropriate work he can manage . . . it will be of great help to you all. And it's not necessarily isolating him; he could still have friends over, see the school tutor once each week, maybe attend a small extra-curricular club meeting now and then, if he's up to it. Maybe there's a home schooling co-op type group in your community that you could hook up with? We have one near us, and it was a great opportunity for some social interaction and learning in a small group setting, rather than the large junior high and/or high schools. Some of these are set up for the participants to attend a group lecture or "master class," or just go on a field trip, focused around some learning objective. In order for your son to have home schooling (even for the scant two hours each week), do you have or will you be getting an IEP? If so, perhaps you could work into that some additional accommodations that will further support his ability to "keep up" so that returning to school eventually won't feel like a giant leap. We home-schooled, with the help of a once-per-week tutor, for about 4 months when our DS was in his worst shape, and having an accommodation for "modify assignments and assessments for quantity, not quality" really helped. Some kids don't need all the repetitive drilling (math, spelling, etc.) that can come with some cirriculums, so cutting out a good bit of that "busy work," provided DS could demonstrate his mastery of the concepts doing fewer homework problems, etc., really helped. Unfortunately, sometimes, I think a lot of the "school work" our kids are asked to do is more about keeping them busy and quiet than it is necessarily giving them the opportunity to learn something new, so if you're able to whittle down the work he's "missing" to the true kernels of the cirriculums, then, if he's ready and willing to go back to the conventional classroom at some point, he'll likely feel less "behind" overall. Good luck to you!

Just following up . . . DS18 had Tdap booster exactly one week ago today; it was his first tetanus booster in nearly 14 years. It may have been totally unrelated, and to be fair, we traveled on vacation which has its own stressors for many, myself included, but DS did report some increased anxiety along about 3-4 days following the vaccination. We responded with some Pepcid to lower his histamine levels, and that seemed to do the trick. Here we are a week out, home from vacation, and no signs of any long-lasting ill effects.

Maybe try some bentonite clay? You can mix it in juice and other than adding a little grit, it is virtually unnoticeable.

Try this thread: http://latitudes.org/forums/index.php?showtopic=5023 Also, Dr. Chunagi in Detroit, Dr. Kovacevic in the Chicago area (Hinsdale, Illinois, I believe, or maybe Downers Grove) Good luck!

DS is getting a tetanus booster next week in preparation for college (his last one was more than 12 years ago), and as his school required neither the meningitis nor the HPV vaccines, we don't have to deal with those in terms of either getting or fighting for exemptions (thank goodness). While I'm on the fence about the meningitis one myself, I will never, ever, ever consent to Gardisil for DS, and since he's 18 now and thus expected to speak for himself on topics such as this, I've schooled him pretty thoroughly in declining anything other than what he and I have thoroughly discussed and jointly approved/decided. And if we DO, ultimately, decide on the meningitis vaccine, he will get that one on a separate occasion, well spaced out from any other innoculations.

Billn -- Sorry you're going through this, but I hope you won't get too discouraged by it. In our experience, what you're experiencing isn't, unfortunately, unusual. Our PANDAS journey highlighted two things for us: 1) the rapid-fire improvements we saw under the initial introduction of abx did not continue throughout the entire treatment period; and 2) especially for older children (our DS was 12 at PANDAs DX but, we suspect, had been suffering for several years prior to that DX), treatment and healing is more like a slow slog than a sprint. Our DS showed immediate, very dramatic behavioral improvements when we first started him on Augmentin, but the pace and drama of those first improvements didn't continue; the improvements became more subtle over time. So much so that we initially thought the abx had "completed the job" and took him off; but then the backslide in behavior would start up within 24 to 48 hours, and we'd realize he still needed the abx. Finally, we started daily journaling -- just a few notes -- so that we could better track the improvements. The things he'd previously been doing that he'd been able to stop, the things he hadn't been able to do for several months that he was now able to do again, etc. Higher dose of Augmentin? Yes, I think so. Like I said, our DS was 12 years old and about 90 pounds when he was first diagnosed, and he was put on 1,000 mg. of Augmentin XR, twice daily (the same med and dosage that Sammy Maloney of "Saving Sammy" was given). While that might seem like hefty dosage, many PANDAS kids have taken that, and since the recommended adult dosage of Augmentin XR for conditions such as sinus infections, etc. is DOUBLE that (2,000 mg., twice daily). Additionally, the XR (extended release) formula is thought to be beneficial on a couple of fronts: 1) Augmentin's half-life is pretty short, so the extended release keeps the med active longer, and 2) the XR version also has a higher clavulanic acid ratio, which is thought be helpful. It might be worth asking your doctor about. Damage with extended use? I'm sure it can occur, and many doctors are very concerned about the phenomena of abx-resistant bacteria and/or c-difficile. Dr. Swedo indicated in a panel discussion that while she doesn't believe that consistent, longer-term abx use necessarily contributes to "super-bugs," she is concerned about it contributing to c-difficile. I can only offer, however, that my DS was on Augmentin XR for almost 2 years before we weaned him off, and he did not suffer either of these negative consequences. We did (and still do), however, give him pretty large quantities of probiotics in order to keep his gut populated with beneficial bacteria. If you are looking at an in-patient intense OCD facility, I would first confirm definitively that they will follow a PANDAS treatment regimen (abx, etc.); there are some facilities that claim to understand/know PANDAS but then cease abx dosing during the patient's stay. Honestly, at the stage of the game your DD is in, our DS would have been too fragile for a residential program; his brain was not well enough to function in a strange environment on any level, so I feel as though putting him in such a program at that point would have done more harm than good. If you can, and have the resources, I'd suggest continuing with abx at home and perhaps arrange ERP sessions 2 or 3 times during the week while she still stays at home with you, and then you're around to "help" and support the homework assignments a good ERP therapist will recommend. Many families find that ERP therapy, let alone an in-patient program, is extremely difficult -- if not impossible -- for a child to be compliant with until there's been adequate healing. When they're so fragile and frightened and unable to put executive functioning into play consistently, therapy can be very tough. I will say, however, that for kids your daughter's age and older, I feel as though SOME therapeutic tools, even if they can't use them consistently or effectively at first, are still worth introducing because they can help prevent the OCD behaviors from becoming full-blown "habits" and therefore more intractable. As for psych drugs, our experience has been that if they can help set aside some of the distress and improve you and your child's quality of life, they are worth considering. Just maintain any dosage very low, and very slow, and ideally consult with a PANDAS-savvy practitioner with respect to any such meds. Finally, we never did IVIG, so I can't advise on that. I'm sure you'll get more feedback from others here in that regard, and your PANDAS doctor should have some advice, as well. For us, our DS responded so well to abx that we didn't feel it a necessary component to treatment. He also has a tendency toward being hyper-immune, rather than immune-compromised, so unclear that donor antibodies would actually bring anything substantive to the table for him. Try not to lose the faith, and listen to your gut!

It is my understanding that there are doctors at the Children's Hospital of Detroit (Chunagi? Something like that.) who are familiar with PANDAS/PANS. Not sure how proximate you are to that, but it is an option. Also, check the "Doctors Who Have Helped Us" topic on the pinned threads at the top of this forum. There is more than likely a couple of doctors in Michigan or Ohio noted there.

Perhaps genetics are the answer, as mmiglio has suggested. Longer-term use of melatonin has not been a problem for us.

Beerea22 has some great ideas. I agree that an IEP would be a very good idea, especially as it has become my impression (in our district, at least), that the older the student becomes, the harder it can be to get one in place; there seems to be some outsized concern that parents want IEP for their kids only in order to boost college test (SAT and ACT) scores by giving them advantages such as extended time, alternate testing environments, etc. I might be misinterpreting what you've told us thus far, but your DS's actions sound to me very like my DS's "avoidance response" when he was still recovering, and frankly still something of a "go-to" when he gets over-stressed. New environments, new people, new expectations, etc. can put a strain on many people -- you don't have to have PANDAS/PANS to feel it. But yes, I think that in our kids, their brains are still healing, as well as maturing, so running in the opposite direction from what's causing the stress seems like the natural, even "right" thing to do. I, too, would encourage some Algebra over the summer, in small bites and more as a device for rebuilding his "math confidence" than necessarily trying to make up all the missed work; that might be too stressful a goal. But if he's avoiding that because it's still harder and more frustrating for him than it was pre-PANDAS (my DS certainly found that to be the case initially), then he's going to need some strong support to get back in the game. You might try actually sitting next to him while he works a few problems and ask him if he can work them out loud, verbally, as well as on paper. Let him explain the steps to you and what he's doing, and if he gets stuck or agitated, you can try some encouragement, such as reminding him that he knows what comes next. In my DS's case, it took several weeks of that sort of coaching before he had his confidence back that he could, in fact, do math again successfully and so he stopped working so hard at avoiding it. Overall, I think getting your DS's "head back in the game" to some extent with academics -- math or reading or anything along those lines -- will help prepare him for the start of high school and hopefully reduce any avoidance impulses he might have. What to actually request in the meat of your IEP is a whole 'nother ballgame; there's another forum here for academics/school issues, so you might search there for "IEP" and see what others have found useful and attainable. Any IEP for your DS should be as specific as possible to his specific needs, and, to some degree, you may not know entirely what those needs are until he's actually back in school. You can request a meeting to modify it at any time, of course, but it's still something of a process and typically doesn't get put into effect immediately. I would consider things such as: extended time for assignments and assessments; an alternate testing site (quieter, less distracting) for assessments; a "resource" period during his school day so that he can relax and regroup, maybe catch up on some work if he's up to it; since it sounds as though he's into computers, if being allowed to type/keyboard assignments (especially English or humanities essays) would be less stressful/difficult for him than hand-writing them, I would request that. Maybe he would appreciate having a locker on the end of the row, rather than in the middle, so that he's less jammed up with other students when he needs to use the locker, and maybe it would be helpful if he were allowed an extra minute or two during passing periods (between classes) to get his things or organize his thoughts, so you could ask that he be excused from being marked tardy in those instances. My DS appreciated being allowed to be excused from "all-school assemblies" and pep rallies in the gym because the noise and chaos was just too much for him at times. One KEY accommodation we requested and were provided was the following: "reduce assignments for quantity, not quality" meaning, if he had a math assignment and there were 30 problems that were intended to reinforce and demonstrate a single concept, so long as he could demonstrate mastery of the concept doing, say, only 15 out of the 30 problems, that was okay, and he still received full credit. This was the genius suggestion of one of his gifted education junior high teachers and it proved to be worth its weight in gold during high school. Even in advanced classes, some teachers really believe in "drilling" concepts and/or lots and lots of written work (worksheets, definitions, etc.), what my DS would consider "busy-work," which he abhors. Work for work's sake, without the benefit of learning something new, is anathema to him. So this accommodation worked beautifully for taking some of the stress and strain out of the equation. Hope that helps. Overall, I would just do what I could to help him get his head back in the game slowly, with as little pressure as possible, while still encouraging him that he's got what it takes, that he can do it, that it will get easier the less he works at avoiding it and the more he works at remembering that "He's GOT this!" Good luck!

I like Mayzoo's suggestion for having titers drawn first; great idea, and if I'd known before we did DS's boosters, I would've done the same. Frankly, except for the "optional" things like chicken pox (varicella) and HPV, I probably would vaccinate. But I would stagger the vaccines/boosters and not let the ped corner me into doing them all at once just because that may be more convenient. If it costs me another $25 co-pay to come back 3 weeks later for another shot, so be it.

Yes, ultimately it was treatment dose (Augmentin XR, 1,000 mg., twice daily) that he was on for the two years. Like you, we first tried an abrupt "stop" a couple of times a few times, but he regressed behaviorally every time so eventually, with the help of a doctor who was willing to renew the prescription over and over again, we kept him on. Finally, once he seemed to be doing really well for a sustained period (6+ months) without any major age-inappropriate events or mishaps, we decided to try and take him off again. But because we had come to believe that the abx was doing something beyond just fighting infection or quelling the immune system response (clavulanic acid, for instance, is thought to have anti-depressant qualities, and beta-lactam abx are thought to have glutamate-modulating properties), we didn't want to pull it suddenly and have him snap back, more or less like a rubber band. So we weaned him over about 4 months, overall, first dropping his evening dose from the 1,000 mg. to the 875 mg. formulation for a couple of weeks, then halving that evening dose while still keeping the morning one static. Then we dropped the morning dose down to the 875 mg. for a few weeks, too. Eventually we dropped the evening dose altogether, then we halved the morning dose, and then we finally dropped it, too. Well on abx alone? No, not entirely. But my DS had had a "regular OCD" diagnosis since he was 6, and we didn't successfully get a PANDAS diagnosis or treatment until he was nearly 13; he "fell off the edge of the world," or had his worst and most dramatic PANDAS episode of his life at age 12 and became completely nonfunctional -- curled up in the fetal position on the floor of his room, unable to go to school, unable to participate in any of the normal, age-appropriate activities he'd willingly and capably done before, even with OCD in and out of the picture. So he had more than 7 years to develop a whole host of OCD-coping behaviors and thought processes that create a major web for unwinding. At his worst, we had him abx as well as both a low-dose SSRI and intensive therapy (ERP), 2 to 3 days per week, plus "homework." We have also used lamictal, an anti-seizure med that, again, is thought to have glutamate modulating capabilities. And we've been doing supplements since about age 13, as well, thanks to this forum and much of the research that has come across from all these wonderful, knowledgeable and kind folks. Success story? I think he is one. Within a month of beginning abx, we were able to start getting him back into school, slowly, one class at a time, but he was able to do it. Within 8 months of abx, he was back in school full time. Within 12 months of abx he was essentially himself with respect to the outside world, reserving his meltdowns and other age-inappropriate behaviors for the safety of his home. By the time we took him off the abx completely, he would appear to anyone who didn't know him extremely well to be 100% himself again, though we could tell he was still struggled at times. My DS still has some OCD tendencies, exacerbated by stressful events; at this point, I'm assuming that this is part of who he is. He still takes a low-dose SSRI and supplements, but other than the work he does on his own in terms of what I'll call "situational ERP," he doesn't attend any regular therapy anymore, though we wouldn't be surprised to see him return to therapy for periods in his life during which his stress increases substantially. He graduated summa cum laude from high school and he's scheduled to attend college in the fall as an engineering major. Based on some of the other incoming freshmen engineering majors we met during his scholarship weekend at the school (he's also gotten a four-year academic scholarship), I'd say he's going to fit in pretty well with the student body, as many of them are "quirky," like him. I guess my closing comment would be that many of us find this whole PANDAS/PANS thing to be a marathon, rather than a sprint. But the race is still winnable and even enjoyable, in the end.

While the research has not been done that substantiates our experience or my theory, I think older kids need perhaps more time on abx for sustained recovery. After several starts and stops and regressions and restarts such as you've described, we kept our DS on treatment-level abx for nearly two years before we slowly and carefully weaned him off. I don't know if that's because he'd been suffering with PANDAS longer prior to being correctly diagnosed and treated, or if it was because the strep he was contending with was more "emeshed" in his cellular make-up because it had gone untreated for so long (sinuses, biofilms, etc.), or if there was another reason he needed the Augmentin for as long as he did. But he did. Also, if you can get it, I might suggest you try Augmentin XR in the 1,000 mg. formulation, also twice daily? Given your son's age, and assuming he's proportionate in terms of weight, that XR might be more effective for you. It was for us, and my DS was almost 13 when he was diagnosed and "adult-sized" in terms of med dosing (someone else can check me on this, but I think anything over 90 pounds is subject to adult dosing).

Yes! While we feared it, frankly, orthodonture was definitely a positive for our DS. He had both braces and an expander (tried a headgear, but that was miserable for him as he had trouble sleeping with it). I thought maybe it was the fact that the pressure in his mouth from the appliances and the shifting of the teeth was commanding some of his attention, so his focus on other, OCD-tendency stuff, downshifted. Based on Kim's post, however, now I need to jump on the TS forum and see what that's all about! Very interesting!

Based on our experience, I frankly have to question the reality of "normal" or "regular" OCD/ADHD/Tics, etc. My DS was diagnosed with "regular" OCD at age 6, basically because 1) we couldn't tie it to strep because he is asymptomatic in a classic sense, and 2) no one in our area was on board with PANDAS/PANs at that point in time (2003), even if we HAD had that link. So he was treated with therapy and then eventually SSRIs for 6 years until he had a decline so dramatic, and so rapid, that neither therapy nor drugs could address, and that sent me running for answers "outside the box." By that time, PANDAS was a little more well-known in my area (though not generally accepted), and Beth Maloney's book, "Saving Sammy," finally gave me another living, breathing example of a kid who was classically asymptomatic for strep and yet was suffering from PANDAS by virtue of strep's impact on his immune system. Sammy and my DS appeared to be carbon copies of one another. So, we did finally find someone who would help us, we found not only high strep titers but rising titers, and a 30-day abx trial had a remarkable, positive impact on him. As did several additional months of abx therapy, along with ERP. If not for the PANDAS treatment (i.e., abx), I know we would not be where we are now . . . which is a good, happy, fully-functional place. Meanwhile, for all the 6 years during which we met with doctors and therapists, attended conferences regarding, and read research regarding OCD, we were told repeatedly that no one really knows for certain the "origins" of that disorder. They've found a gene expression in dogs, they're conducting genetic research in humans, they're increasingly focused on brain glutamate, but still, no definitive information. And yet, early in our PANDAS journey, the one thing many, many of these folks were readily willing to state is that infection/autoimmune function was NOT behind OCD. How they could so readily dismiss that as a possibility when they had nothing to put in its place, I will never understand. I do believe that there is a genetic component, or a pre-disposition. But I also think, given all the evidence in the last several years brought to the table by folks on this forum, the NIMH, the IOCDF, we're only a decade or so away from the western medical community at large finally recognizing that infection and immune response is THE primary force behind the ultimate expression of any number of mental disorders, including OCD, TS, bipolar disorder, etc. So, my DS's "onset" was sudden at 6, but it wasn't especially dramatic. His decline at 12 was both sudden and dramatic, but by that time, he'd had his "regular OCD" diagnosis for several years and even many of the PANDAS "experts" were wary of diagnosing him with such because of that extended history. I do recall having notes from a panel discussion with Sue Swedo, however, at which she opined that a dramatic increase of a Yale-BOCs score, even if it was above the non-clinical range to begin with, could be indicative of a PANDAS episode. In the end, I embrace most of the experts' statement that this has to be a "clinical" diagnosis. What is the patient's history? Can you tie any particular changes in temperament or behavior to an illness, exposure to an illness, etc. Does abx have a positive impact? To me, that's key. Keep an eye out, journal EVERYTHING if you can, trust your gut.

Another "yes" vote for Lamictal here, as well. Very effective. And now it is available in an XR version. On top of being an anti-seizure and mood stabilizer, it is also thought to be a glutamate modulator, which many suspect is directly tied to psychological behaviors sets of many types.

I agree with kakrpa that any psych worth his/her salt, if given information that the anafranil is effective and supportive, will not look to make any rx changes immediately, if at all. Particularly if/when you have a record of the drug's use and effectiveness in your DS's treatment regimen. That being said, I would hope that the psych would also have something that they might add to the conversation . . . insights or suggestions that you could take into consideration as your DS continues to grow, mature and wean off abx, etc. Ours, for instance, will discuss recently published studies or experiences of other patients with us and say, "You might want to consider XYZ." And then we'll leave the appointment and read the studies she referenced or talk among the three of us (mom, dad and son) and make the call as to whether we want to alter anything, or if we feel good about how everything is as-is, and want to keep the status quo. There's no pushing or insisting or denying -- just listening and sharing and adult conversation. IMHO, that's what you want in any care provider. Our psych is PANDAS/PANs-savvy to a degree and thus accepting of the role infection/auto-immune can have in DS's picture at any given time. That being said, even she has only a moderate amount of experience actually dealing with PANDAS/PANS, so she looks to us for experiences and information as to how DS is responding, what he needs, etc. Again, I don't think we could ask for much more along those lines. She does not take insurance directly, so we pay out of pocket and then I can submit for 80%/20% reimbursement under our medical insurance coverage directly. She's $195/hour, and a typical medication-management type appointment will typically run between 30 and 45 minutes. If we haven't seen her in a while and/or there's some new development or DS is particularly chatty, it can go longer and yes, there's some sticker shock when that happens. But it doesn't happen that frequently and now we're all mindful of the clock. Plus, unless we're making a new change or something, we only see her every 4 months or so, so that one hour goes a pretty long way, all things considered. As for necessarily finding a psych who will "see the Lyme's connection to his OCD," I realize some will disagree with me on this, but I'm not certain that this is absolutely essential. While I think most psych's these days who keep up with current research will acknowledge that immune response can both trigger and/or exacerbate various anxiety conditions, I'm sure the number of them who actually "embrace" PANDAS/PANs, Lyme or any other infectious cause of long-term OCD as valid is quite small. Even many PANDAS/PANS docs would have us believe that infection-triggered OCD should be short-lived, and anything that extends past a point is "regular OCD," will little or no relation to infection. But, in the end, you have a medical doctor who's treating his Lyme, and you're looking for a psych to help with medication management for the OCD. If your DS is doing well along about the time you/DS want to titer down off the Anafranil, a good psych will join you on that journey. The psych may not believe or agree that DS is ready to titer down because you've finally irradicated the infection, but why should that matter, so long as he'll help you manage the downshift? So long as DS is responding well and maintaining health even as the weaning continues, you should get nothing but support from the psych in that process. All the best to you!

What a horrible situation to find yourselves in; I'm so sorry. We, too, found Risperdal to be a poor choice for our DS when he was in a bad place; he was prescribed Seroquel, also, for a short period. I won't say that we liked the Seroquel, but it did basically put him to sleep for a couple of days and gave all of us a chance to catch our breath. On a lower dose, though, it just sort of "dulled" him out, made him not himself, and we didn't think that was a good answer. I'm sorry that I'm not well-versed enough in 23-and-me or the genetic results in general to speak to any of that and the possible match or mismatch with SSRIs. However, the thing is that, even if you can find the right SSRI and the right dose (low) for your DS, it is unlikely to have a quick enough impact for the hospital; those generally take between 4 and 6 weeks to come to full effectiveness, and especially because you'd want to begin with a very low dose and increase very slowly, if at all, that's a luxury you're probably not going to be afforded in the current situation. They want him quiet and compliant ASAP; unless it's a research or teaching hospital with doctors well-versed in PANDAS/PANS, like Mass General or USF, for instance, I doubt they want to or can afford to address the subtleties of his condition and therapeutic needs. I think reaching out to Beth might be a very good idea, as dcmom has suggested. Holding insurance coverage over your head so that you will agree to anti-psychotics is both unfair and unfortunate, but without a lawyer or advisor to help you advocate for a different "standard of care" relative to a PANDAS patient as opposed to a standard "psych" case is likely to be tough. Another suggestion I might have would be that you try to set up a private appointment with the staff/attending psychiatrist at the hospital? Speak with him directly and get a feel for both his/her level of PANDAS awareness as well as the willingness to think outside the box? Also, if you have a treating psych that you've worked with before on a private basis and whom you trust at all, I would ask them to consult with the hospital staff in that regard, as well. Sending positive thoughts and cyber hugs to you and your DS.

Yep Wombat, we'd both heard and read that about some SSRIs, but supposedly neither Lexapro nor Zoloft were on the list of "weight offenders." With a teenage boy, it can be really difficult to tell what's atypical "hungry" and what's standard . . . most teenage boys I know eat like horses! In DS's case, though, it doesn't appear to burn off as readily. Admittedly, he may have some genetics to account for some of that. What strikes me as I look back in journals, though, is how, before SSRI's, he was almost always "revved up" about something . . . lots of jumping, pacing, etc. So certainly he was burning calories at a fairly rapid rate at that time. The lesser anxiety and "itchiness" in terms of need to move he seems to have these days, I would think, would contribute to a slower burn metabolism-wise. Whatever the case, for him, at this point in his life, it's a worthwhile trade-off.

Sorry you're going through this. I don't know if it helps to know that so many of us have been in similar places during our PANDAS/PANS journey, and you are not alone. I have to second the advice that you get to a PANDAS/PANS literate doctor, ASAP. With the behavior set you're seeing, it is very likely, IMHO, that your older DS is likely to be misdiagnosed by any practitioner not well-versed in PANDAS/PANS, further delaying appropriate and effective treatment options. This may be even more so the case for your youngest as, given the early stages of development thus far in play for him, many docs are likely to steer clear of any "atypical" treatment protocols out of concerns over misuse of abx, etc. In the meantime, I would consider some herbal, supplementary and OTC medications to control inflammation and potentially even defeat the staph. Olive leaf and coconut oil are supposed to be anti-bacterial; look for a high olepeurin component in the olive leaf (18% to 22% is about as high as it gets over the counter, so far as I've found). Curcumin can be a powerful anti-inflammatory. Both now and once you begin any abx, I encourage you to make sure and use a good-quality, multi-strain probiotic; many of them come in powders or capsules that you could mix into anything cold (yogurt, ice cream, applesauce) without destroying the beneficial bacteria. These will help protect your kids' guts during the rest of the treatment process. Hang in there!

We've not use Prozac for any notable period, so can't speak to it specifically. But DS was first taking low-dose Lexapro and more recently Zoloft. At 18 he stands 6 feet tall, and I suspect he's still growing. So in terms of quantified growth height-wise, I haven't seen any ill effects. That being said, despite research to the contrary and denial responses from the two psychs we've had since DS's began taking SSRIs, I do think they've contributed to weight gain. Now whether that's merely because they've assisted him in "chilling out" or because there's an actual link to metabolic function, I don't know. But he was a "pipsqueak," not underweight, but just on the fringe, before SSRIs, and he's had to work hard at portion control and sufficient exercise to keep his weight in check in the last few years while on the medication.

I know you don't want your actions to backfire, but no matter how bright or self-aware your DS is, he's still just 14. So I think I would do my best to incorporate his concerns and honor his feelings, while at the same time letting him know that your goal is to help him feel better . . . less depressed, more functional. I don't know that psych meds have to be the end-game, but if an evaluation will help him get counseling, then that's the next appropriate step. We're in the Midwest so likely our PANDAS-savvy psych would not work for you. But we found her through the "Find Help" function on the International Obsessive Compulsive Foundation's web site: https://iocdf.org/find-help/ I know you say that OCD isn't a big part of your DS's symptomology these days, but since the IOCDF has more recently embraced PANDAS as a viable disorder, perhaps the professionals listed through them are generally more amenable and knowledgeable? And maybe you can find someone in your area? I just picked up the phone and started with telephone interviews of psychs in our area. I managed to find one who accepts and seems to understand PANDAS in terms of med dosing, and who's also "into" current research, reading new papers and keeping current rather than relying upon decades-old psychiatry or the recommendations of pharmaceutical representatives. We've been with her for almost 5 years now and have been very pleased. There's another recent thread here about SSRIs and PANDAS patients, and like everything else, response to meds appears to be entirely personal and on a case-by-case basis. My DS does well on low-dose Zoloft, and I know that there are some others who find Prozac supportive. You'll also see stories of families for whom SSRIs did not work well at all. A good psych will take everything into consideration and hopefully, if they recommend meds at all, will honor not only the "low and slow" but also your and your DS's feedback regarding his response to anything you might decide to try. Lastly, you mention the current abx but not much else in terms of supplements, etc. My DS also had chronic sinusitis and we wound up keeping him on abx for about two years, full time, before we were able to successfully wean him off without a big back-lash of behaviors. We suspect he had some strep hiding out in his sinuses . . . potentially protected in biofilms that were tougher for the abx to break through, or potentially even impervious to them. We added NAC to his supplements and that seemed to make a big difference; there's some research indicating that it can act as a "biofilm buster". NAC is another one of those substances that some people react well to and others don't, but just thought I'd mention it. Also wondering if you've tried quercitin (anti-histamine properties) or inositol (serotonin-booster) and/or similar supplemental items? If so, make sure to share that with your psych, as well, since he/she may choose to tailor any other suggested responses, as our does. Good luck!

I don't know if inflammation from reflux can in and of itself affect PANDAS/PANS, but inflammation anywhere in the body, from any cause, could be a sign that inflammation also exists in the brain and is contributing to the PANDAS behaviors. In our case, we found that reflux and eczema were inflammatory responses to excess histamine in DS's system. Using Pepcid for a few days tamed the reflux and eradicated the eczema, also.

Lydiasmum -- Like you, it seems pretty clear to me that, at a minimum, susceptibility to PANDAS/PANS has a genetic component. But, of course, that depth of history is rarely inquired into, even among PANDAs/PANS specialists. And other than perhaps encouraging yet another line of research (genetic) into this condition, I'm not sure what it counts for. Except that maybe it helps parents like you and me make a bit more sense out of the chaos that is PANDAS/PANS. My DS was extraordinarily healthy overall, and classically asymptomatic for strep (no sore throat, no fevers, no physical symptoms of any sort), yet we finally got some treatment for PANDAS because of his high and consistently rising titers. Yet, like you and like me, he was somewhat prone to worry and anxiety even before our initial OCD diagnosis, but I'm not sure that even the manifestation of that "predisposition" wasn't due to early, young, undiagnosed strep episodes given consistently recurring ear infections from about 15 months until we finally submitted him for ear tube surgery at the age of 3. He's an only child, by the way, so we had no sibling experiences to measure him against in terms of strep exposures and illnesses. Meanwhile, I too, was an atypically "healthy" child; my sister came down with strep at least twice a year when we were growing up, but I never "got" it. At least not in the classic sense. But I was, admittedly (sheepishly now) a behavioral handful, with most of my behavior I can now see in retrospect due to feeling highly anxious much of the time and therefore trying desperately to control everything around me . . . uber control it, even. As an adult, I'm sub-clinical OCD but off-the-charts Type A when it comes to both my home life and my work life. I'm learning to balance and mellow a bit the older I get, but it doesn't come naturally. I got my first ever case of classic strep throat in my 30's, when my DS, despite no symptoms of his own, brought it home from grade school with him. This time, I had fever, a raging sore throat -- all the classic signs. It was a revelation, even before knowing about PANDAS/PANS. It also serves as a sign to me that my DS's immune system can and will "right itself" at some point, hopefully earlier than his early 30's given the interventions we've been able to provide him that my family never had a clue might've helped me. I think Dad's genes come into play, as well. My DS's dad is also prone to anxiety. DS is our own walking, talking Malatov Cocktail!

That's a really big question and certainly full of varying answers, as all our families' cases tend to have both some similarities and some distinct differences. I wouldn't say that herxing "contributes" to PANDAS/PANS so much as it may be the result of a treatment plan, particularly if Lyme or co-infections are in the mix. It's what can happen as a person's body and chemistry react to medicines and/or therapies for irradicating the infection. And the methylation cycle is very complex . . . I certainly don't understand all of it, and I'd honestly be way over my head in terms of capability or resources (time, especially) trying to wrap my brain around all of it. But there are some basic concepts there, some simplifications, that have been provided in some research and expert opinions that I'm able to both understand and incorporate into therapeutic responses for my DS that work. Yet, despite some great research, a growing roster of PANDAS/PANS experts to whom we can turn, and this very well-versed forum community, EVERYTHING -- all the information and advice -- has to be taken only alongside your own experiences with your PANDAS/PANs person. What works well for one sufferer may only aggravate another and vice versa, so it is a complicated web of triggers, behaviors and therapies and every family, hopefully along with a knowledgeable medical professional, ultimately has to sort out what works best from what doesn't for their own situation. PANDAS/PANS can be triggered/exacerbated by many things, unfortunately. For most/many of us, it starts with a bacterial infection (strep, myco pneumonae, lyme), but then once the immune system is off balance, other, more innocuous (or seemingly innocuous) things can set off the behaviors and/or illness: allergies, atypical stress, a viral infection, other medical conditions such as colitis, etc. My best suggestion to you would be to search the forum for some of the most prominent symptoms/behaviors you're seeing in your case, and see what others have experienced and might recommend going forward. All the best to you.