MomWithOCDSon

Part of what was difficult for our DS going to school was the chaos, noise, pushing/shoving that went with passing periods, when the doors opened first thing in the morning and the final bell at the end of the day, etc. So our IEP included an accommodation for him to come into the building 5 or 10 minutes early via a staff-only door; then he could go to his locker or the resource classroom or wherever he needed to go ahead of all the chaos of the rest of the school population. He was also permitted a 5-minute head start on passing periods for the same purpose. And then, when he left school for the day, he was again allowed to exit via the staff door rather than having to contend with all the other kids. I don't know if school work/home work itself is an issue for your DS, but for ours, it contributed to his overall reluctance to go to school. He abhorred repetitive, "busywork" types of assignments; perceived them as a waste of his time and, to be honest, they were. So the gifted teacher very kindly/wisely advocated for an IEP inclusion that allowed for "reduction of assessments and homework for quantity, not quality." So, if he could demonstrate a full grasp of the math concepts by doing 5 of the more difficult problems instead of 25 problems with repetition of the steps and/or concepts, then that's what he was allowed to do. This accommodation prevented the "snowball effect" that can be created by the more conventional accommodations of allowing "extra time" for assignments and/or tests, because that extra time can lead to things just piling up, rather than getting done. He was also allowed to skip school assemblies, pep rallies, etc. as, again, the sheer noise and chaos of those events drove him out of his skin. And he had a once-per-week session with the school social worker so he could decompress and share with someone on-site things that were bothering him or that he struggled with. In the end, the strong bonds he developed with the social worker, the gifted education teacher and his case worker were what made school "fun" for him again, and made him more willing to attend. Family support is awesome to have, and I can completely relate to the idea that you need some time/opportunities aware from care-giving for yourself, as well; yeah, without a spouse or a retired parent or something to help pick up where you leave off, you may need to try and find a supplemental care-giver. Not that it's the same thing at all, but were I in your shoes again, with a kid your DS's age, I think I might see if I could find someone who works with, or is studying to work with, autistic kids. In the heat of his illness, my DS's sensitivity to his environment, his mood swings, his more challenged communication skills, reminded me to some extent of the challenges I've seen some autistic kids deal with, so I tend to think that a care-giver who can be sensitive and supportive to those sorts of characteristics would have more patience and compassion for my PANDAS kid. Just a thought . . . All the best to you. Hopefully, the medical treatments are going to continue to drive improvements, and some of these concerns will dull or maybe even entirely melt away over time.

I'll echo ibcdbwc -- sorry to have initially looked but not responded. I felt certain some other folks would have something more practical to add than I might as, similar to ibcdbwc, we've pretty much come out the other side of this thing now and, fortunately for me, my DH and I were able to trade off supervising our DS as he went through not being able to be in school, though we didn't have any other family around to "spell" us at all. Yes, I worked with my employer to telecommute several days per week, and DH had been self-employed and working out of our home for a couple of years before the PANDAS hit. So, really, I was re-arranging my work terms in order to provide DH with some support, rather than leaving him "holding the bag" 5 days per week. That being said, our DS was unable to attend school regularly for about 5 months, but three of that were prior to our getting a PANDAS diagnosis and appropriate medical interventions; once he started the correct antibiotics, he improved to the extent that we were able to work him back into a school routine. Hopefully, that will be the case with your DS, as well. I would reach out now to the school and request that you commence a 504 or IEP Plan process to give him added supports while in the school environment; frankly, an IEP Plan will provide him with the most supports because, in addition to accommodations, he'll be entitled to a resource class period and a case worker who'll help him -- and you -- navigate school with the behavioral issues that PANDAS can bring to the table, including the school refusal. For instance, our DS was terrified of going to school and wanted to refuse, so, with the help of an IEP and the case worker, we worked out easing him back into a full school day gradually. All the best to you.

4kiki -- You sound much more well-versed on the methylation issues than I am, so I will defer to you there; our journey began long before all the methylation research and information was commonly available and in lay-persons' discussions, and so when we "lucked into" a beneficial regimen for our DS, I admit to having not pursued those angles to any distinct depth. In terms of Vitamin C, I can only say it doesn't seem to hype our DS up though, beyond food sources, a single supplement is his only source of additional Vitamin C. We've been using SolaRay's "QBC Complex," a blend of quercetin, bromelaine and Vitamin C, for a few years now, only to benefit so far as we've seen. So much so, in fact, that I've begun taking it myself during allergy season, and it seems to help. The lactobacillus/allergy link is a more recent discovery of ours, via a story on NPR, though our DS has been taking probiotics for many years, also. Below is a link to the study the NPR story referenced. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2883099/ Glad things are going well for you! Have a great summer!

Hang in there! If you've poked around here on the forum a bit, you'll see that you are very early in treatment at this point, so while it's feeling rough, it will very likely get better as the days go by. Not having the benefit of any of your history, I'm not sure how bad things had become before you got to Dr. L., but certainly something told you your DD was suffering from something, and thus you sought out and were able to consult with one of the top docs in the field. Unfortunately, from what I've heard of from another of Dr. L's current patients, she and her office are booked to the brim, so it can be tough to get additional, timely support at times. Keep the faith, stick with the abx and steroids, and do what you can to minimize the stressors for both your DD and yourself, if that seems to be helpful at all. Lighten the load via school and extracirriculars, if you can, and maybe indulge yourselves in something she especially enjoys while she fights back at the PANDAS. Take care of yourself!

MarcyJ -- I have great respect for your experiences and opinions, and it sounds as though you have an excellent team and supports in place for your child. Heartfelt congratulations, truly! This forum is for the purposes of support, so I don't intend to feed an argument. But while I'm not offended by anything you've shared or expressed, I do have concerns that it may be somewhat misleading and/or unhelpful to some others or potential newbies who may happen across this discussion. Having been through the PANDAS/PANs during some 12 years and now (knock on wood) having successfully made it through to the other, healthy-living shore, I feel compelled to share OUR experience and the benefits of our care team, research, etc. 1) All "psych" drugs are not equal, so categorically drawing the line at all of them is not particularly helpful, IMHO. I think we're better off sharing our experiences on a one-by-one basis, particularly as every person's chemistry (PANDAS/PANS or non-PANDAS/PANS)is entirely singular, painting this item with such a broad brush may do some people a disservice. 2) You state that all of the "top" docs in the field (PANDAS/PANS) are "100% against" any psych meds; this is not our experience. It IS our experience, however, that knowledgeable PANDAS/PANs docs believe in aggressive medical interventions for PANDAS/PANS and do not embrace any psych drugs as a primary line of treatment. Having visited, attended conferences at which they've spoken, and/or corresponded with many of the top practitioners in the PANDAS/PANs field, I know that a number of them support and even recommend -- albeit cautiously and judiciously -- some psychiatric med supports, for those individual situations for which they appear to be warranted, in addition to the medical interventions, therapy, etc. 3) Sorry, but it is just not true that if your child responds positively to psych drugs, then he/she does not have PANDAS/PANS. On this forum alone, I can identify over a dozen families for whom BOTH PANDAs/PANs and some successful psych drug interventions have done wonders for our kids; we're one of those families, but there are many, many more. In the end, it may be that, for your DS and his physical and neurotransmitter make-up, most if not all, psych meds are ill-advised. And your point that simultaneous use of psych drugs and medical interventions for PANDAS/PANs "muddies the water" in terms of discerning improvements and/or the actor bringing about those improvements, is well-taken. Particularly in young kids with dramatic PANDAS behavioral presentations, I'm certain every specialist would prefer a "clean slate" for medical treatment, without the added complication of psych med impacts. And certainly, for younger children, I think all parents are well-served to pursue and at least rule out PANDAS/PANs and all available medical interventions before going the psych med route, partially for the diagnostic advantages and partially because, even if psych meds are eventually found to be beneficial in your individual situation, most of us would prefer to implement them as late in childhood, and as sparingly, as possible. We all benefit from sharing, particularly as our experiences extend time-wise and we see our kids go through all the growth, maturation, healing, etc. through this challenging PANDAS/PANs thing. Hopefully, we all learn some new things from one another and can therefore make the best possible decisions for our own loved ones. I know this forum has been unbelievably beneficial and inspirational to my family and has helped us see our DS from the brink of madness at age 12 to healthy college sophomore at age 19. Here's wishing you and yours, and everyone who stops by here, the best, smoothest, most expedient path to a healthy, happy, life!

I totally agree, Nikki, that abnormally high histamine can contribute to psychological function, though our DS had some very obvious physical symptoms as well, including seasonal allergies, eczema, reflux and upper respiratory congestion. We've had much success with antihistamines and histamine-controlling supplements such as quercitin, coconut oil, lactobacillus and occasional use of Zyrtec, Pepcid and Benedryl.

Dasu -- As it wasn't me going through the withdrawal, I can only share what my relative shared with me, which was that, while trying to wean off an antidepressant according to the weaning schedule provided him by his doctor, he experienced a number of unpleasant side effects, such as these "brain zaps." He said they were literally like "zaps" -- like a very fast, brief shot of electricity hitting his brain; said it almost felt like the world's shortest migrane, with a lightning-fast "blip" in vision, inability to think, pin-pointed pain, usually in one specific spot, etc. I can only imagine how disturbing and/or disorienting such a reaction would be to a younger person whose experience and coping skills were less mature, as well as their ability to articulate what was happening to them. Yikes! I have a different perspective than MarcyJ, given our experience. While I definitely believe in medical treatment for PANDAs/PANs, I cannot entirely discount (throw the baby out with the bathwater) the benefits of also employing some psych med interventions during the PANDAS/PANS healing trajectory, or maybe even beyond, depending upon each individual's situation. But I do agree that too many doctors and/or psychs fail to fully account for or apply appropriate caution in prescribing, and I also think that many of them can reach too fast for the "heavy-hitters" like risperadol without having adequately explored other options. Wishing the best for you!

Autoimmune encephalitis (as the dx)

MJL -- I don't know about the McLean program specifically, but I do know that Massachusetts General (in Boston) has a new OCD clinic which is manned by some of the most respected doctors in the field: Dr. Daniel Geller Director, Pediatric OCD Program Massachusetts General Hospital Child and Adolescent Psychiatry, Yawkey 6A 55 Fruit Street Boston, Massachusetts 02114 (617) 724-6300 x133-1056 (617) 503-1436 https://mghocd.org/clinical-services/ocd/ In looking up McLean, also, I see that its OCD clinic was formerly run by Jeff Szymanski who is now the Executive Director of the IOCDF, so its pedigree is strong. Hopefully, you'll be able to get some more direct feedback from some other folks soon. Hang in there and just know that you're doing the best you can; that's all any of us can do.

Ladymavs -- You could check in with DCMom on the PANDAS forum; she's had two kids go through the Rothman program and speaks very highly of it. There are several others over on that forum who've also attended and, I'm sure, would gladly give you some feedback.

Hi MJL -- "DS" is short for "dear son;" the nomenclature sort of carries throughout, with "DD" standing for dear daughter, "DH" meaning dear husband, etc. Just a little short-hand! Tough love IS tough! Totally agree! And believe me, I've done my share of folding, too. It can be helpful if you have someone else in the immediate setting (spouse, grandparent, etc.) who maybe plays a little "good cop" to your "bad cop," or vice versa. In our family, I'm fairly consistently the one who's more strict, no-nonsense, so it comes more naturally to me, I guess. I do think PANDAs/PANs is something for you to look into; there's a host of information in that regard here at ACN. There's a separate forum dedicated to it, in fact. Particularly if your DS's OCD came on suddenly, if he had been sick with strep or a virus in the month or two preceding the first major OCD occurrence, etc. I think it's probably been easier for us to separate the OCD from the person because our son was diagnosed with it quite young. And, at his first therapy appointment (which we attended), the therapist encouraged him to draw a picture of his OCD and give it a name (Odie). So, from that point on, we were able to say, "We're going to the park, but Odie is not invited; he has to stay home!" As he got older, we eventually ditched the name itself, but the separation between the anxiety and our boy, thankfully, stuck. Maybe if you just make a conscious effort to articulate the distinction when you're having those tough conversations with your son? Something along the lines of, "I love and support you, but your OCD is not going to dictate to me, and I'd prefer it didn't dictate to you, either. Tell me what I can do to help you shrink the OCD, because I'm not going to comfort it and make it feel at home because that's a disservice to you and your life." Yes, there are some intensive OCD programs and a number of them are very good, I know. Rogers Memorial has a program in Florida run by Dr. Eric Storch (formerly of the Rothman Center in Florida), and I've heard great things about it. There're also great reviews for the Rothman program, also in Florida. For us, we felt that we were enjoying some success with local weekly (sometimes twice or even three times weekly for one stretch) therapy and the home environment, so we just stuck it out. But I would encourage you to look into those programs if the logistics work for you. My DS's OCD didn't necessarily target school, but it definitely had a place there for a while; generally, he tried to hide it more there than he did at home, so that the other kids wouldn't make an issue of it with him. The tough part about the school environment, too, is that few teachers, administrators or even school social workers or psychologists really understand OCD, so they tend to give into the distressed student, rather than coach him and help him hold firm to pushing back on a ritual or obsession. So they can inadvertently give the OCD a safe harbor during the school day. Does your DS have a 504 plan or an IEP at the school? If not, you might want to consider one, at least for a while, to help him with some of those issues during the school day. That's a whole other topic, but there are, again, some excellent resources through the IOCDF, and your local therapist should be able to help you with that, as well. I could go on . . . . Good luck with finding a local support group, and with your continued research. Just let me know if I can help.

Amie -- In our experience, it's less the drug (risperadol) still being in the system, than the brain's natural chemistry attempting to return to balance once the impacts the drug is designed to have (reducing certain neurotransmitters or preventing receptors from functioning normally, etc.). Our DS was on risperadol for only a short period, but weaning off it still caused some "brain zaps" and other similar unpleasant things. He was quite a bit older than your DS at the time, however (12), so I'm guessing his resulting behavior may have been more moderated because he had a few more coping and/or verbal skills available at his disposal. I had another family member who took a psych drug (not risperadal, but an antidepressant which every piece of literature and the doctor said "few if any withdrawal side effects"), and weaning off of it was brutal, even when the weaning schedule was taken at a much slower pace than the doctor had originally prescribed. Horrible nightmares, brain zaps, irritability, insomnia, vertigo . . . you name it, he had it. But he was an adult, so he did his best to contend with it in a mature way. Bottom line: I think very, very, VERY few doctors with prescribing privileges for these substances have any real clue as to how a person's brain responds to these substances, and particularly to removing them once they've become accustomed to them. We found that the most truthful, reliable information in this regard was usually anecdotal accounts on chatboards and blogs on the internet. Just another example for your doctor(s) to warn you against "believing everything you read on the internet." All the best to you. Hopefully, your DS is nearing the point at which all the confusing withdrawal symptoms and thoughts/feelings he can't fully articulate will begin to abate.

MJL -- So sorry you're going through this; it truly stinks! And being hit with it as a teenager is probably all the harder because his "life before OCD" probably is such a clear, "happy" memory for him. My DS was dxed with OCD at age 6; we dealt with it off and on for the next 6 years (therapy, medication, periods where It was not intrusive, periods where it was very intrusive) before he was finally diagnosed with PANDAS and we realized that he was harboring strep and reacting to that with OCD behaviors. Once we got the strep and immune response under control, his OCD and anxiety decreased dramatically, but he still tends to "rev at a high RPM" and reaches back to some OCD behaviors and anxiety at times, particularly when he's under atypical pressure. I don't know if you've looked into PANDAS/PANS at all but if not, it might be worth just ruling it out, at least. Especially as you're now on your second medication trial and it doesn't appear to be effective. That being said, whether your DS's OCD is microbe-driven or not, I know from experience that confronting the behavior set is important . . . and HARD! How do you help him challenge the OCD while also being supportive? We did our best to separate the OCD from the boy, and to "call out" and express a no tolerance policy for the OCD, as separate and distinguished from the kid. For example, if he quibbled with his glass or silverware at the dinner table because it had "spots" (water spots) on it and insisted that they were dirty and needed to be replaced, we'd tell him those were his glass and silverware for the meal, and he could use them or go without or use his hands, but while we welcomed him to the dinner table, his OCD was uninvited and unwelcome. If he took it a step further and refused to eat because his glass and/or silverware were "dirty," then we'd allow him to get up and replace them himself (no helping hands from us!), but then, in exchange, he had to take care seeing to it that ALL the dirty dishes in the house were cleaned for the next week, or some sort of equal-exchange exposure-related task. OCD support groups for kids his age? I would contact the International Obsessive Compulsive Foundation (IOCDF) and see what they might have available in your area? And I believe they have an on-line portal for teenagers, as well. I know that they have programming at their annual conventions specifically for teenagers who are dealing with OCD, and sometimes local "chapters" or groups run programs, as well. The IOCDF is a great resource, overall: https://iocdf.org/ What have we learned from treatment? That "tough love," particularly as your kid gets older and is thus more intellectually capable of finding loopholes and/or hiding their obsessions and compulsions, is essential. That a consistent "OCD is unwelcome here" response can eventually get results, but it's not fun when it's in process. That OCD is like kudzu, creeping around looking for fresh vulnerabilities, and you have to keep it pruned back or it will just get stronger and more invasive and consume more of your life. That, while actual exposure exercises can be tough and feel "unnatural," life offers a whole lot of more organic exposure opportunities that can be beneficial, like taking your contamination-wary kid to eat lunch at a mall food court, at a table with crumbs on it from its last occupant, etc. What tools/techniques have worked best? It has varied, depending upon the behavior and the circumstances, but I really think that consistently and definitively shutting out the OCD, while embracing and encouraging and celebrating your kid and his victories over the OCD, however subtle, has been our best ally. Our DS knows that, if he hits a rough patch, we're there for him and will help him push through. But he also knows that if he caves entirely to an OCD compulsion and allows it to have a palpable impact on his life, that he will be doing it alone and facing the consequences alone. So, for instance, at 15, if he spent so long in the bathroom that he missed a dinner reservation at his favorite restaurant, then we didn't push the reservation back or reschedule it; he had to make a sandwich or heat up a microwave meal for dinner instead. It's really, really hard when they become upset, tearful, full of self recrimination, etc. Then I would wind up feeling like the biggest, baddest mom on the planet, and I'd want to fold. Eventually, though, I learned that, rather than folding in that instance and thus giving him the impression that the OCD could call the shots or control our family dynamic, I could find another opportunity to be warm and fuzzy, buoy his self-confidence, compliment him on an instance in which he pushed back at the OCD all on his own, or "shrunk it" so that it impacted him less than it had the day or week before. Stuff like that. Is there light at the end of the tunnel? I would certainly say so! It can just be hard to see it sometimes, particularly as you're trying to find something -- the right SSRI, the correct therapist, or even the right diagnosis (PANDAS/PANS) -- to at least help your DS get some leverage over the OCD so that fighting it, shrinking it, is even just a little less difficult than it was the day before. Unfortunately, it is a marathon, rather than a sprint, in most cases. But you can get to the finish line, and so can he. Hang in there! Wishing you all the best and hoping something I've said has some resonance for you/your situation. Feel free to touch base at any time! Nancy

Ladymavs -- Doxycycline or minocycline? I believe it is the latter that recent research speaks to in terms of its success with OCD. In our experience, as the kiddo gets older, that "quick response" can generally demonstrate some lag time, unfortunately. Many times, we took our DS off abx altogether, thinking it had done all it could, only to realize he was still benefitting but in more subtle, less dramatic and timely ways. All the best to you.

I can't recall precisely a quantitative amount advocated by either Dr. Swedo or Dr. Murphy; I'm not even certain that Murphy's paper on the topic of PANDAS and SSRIs makes a specific, quantitative statement in that regard. And it'll vary from med to med, too, since those dosages in terms of mgs. can vary substantially. What I've seen/heard is many families effectively halving what their doctor's "recommended" dose is for their kid, to start. So if they're recommending 25 mg. of Zoloft, you might want to start with 12.5 mg. and see how your kid responds. Give it 4 weeks, and if you're not seeing anything palpable, then maybe you could try increasing it to the 25 mgs and give it another 4 weeks to see what happens. Since these typically take 4 to 6 weeks to reach full efficacy, you just have to guard against drawing a conclusion too quickly and stopping or increasing dosage too quickly as a result. In our experience, the good news is that if you inadvertently take the dosage up too high, seeking the "sweet spot" where it helps as much as it can, you can step it back down again quickly and any activation the SSRI might have caused will fade quickly -- within a day or two. Good luck to you!

PR40 -- I saw this post a couple of days ago but purposefully held back on responding because we really don't have any "long term" responses to share, and I suspect you saw some previous posts on this topic I made years ago during your search. But now I've come back and see your thread still has no responses, so I thought I'd drop you a couple of thoughts. My first question would be, is your DD taking any other "psych" drugs, SSRIs, etc.? My understanding with regard to Abilify when it was first prescribed for my DS was that it's supposedly a "booster," potentially improving the efficacy/positive impacts of other medications like anti-depressants and/or SSRIs. In my DS's case, it didn't seem to do anything for him, really, though I can't recall the dosage and I don't think we had him on it for very long because we didn't see that it was really bringing anything to the table for him. We tried in on two separate periods, and saw nothing either time. Like so many other things, I really think it comes down to personal chemistry. My DS was older than your DD, and he didn't really rage externally so much as internally, though we would occasionally find ourselves on the receiving end of it when we attempted to intervene in a ritual or set of pervasive thoughts he was jammed up with. We found we had more success with another medication (Lamictal) for those sort of behaviors. Sorry I don't have more experience to share, and I hope you continue to see improvements with the Abilify. All the best!

You might try connecting with RNMom here; I haven't seen her on the forum for quite some time, but if I recall correctly, her son had been diagnosed with some type of seizure, and he was prescribed some medication for it, in addition to PANDAS/PANs treatment.

Eanne -- In our experience, the obsessive thinking is a particularly insidious form of OCD, and it can be really hard to "let go" and just keep moving, with a positive outlook and intention. I'm glad you're trying an SSRI again, particularly if it helped you in the past. As for the anxiety, it may be that it will be your companion at times, even with the obsessive thinking itself better under control; easier said than done, I know, but the key, really, is to acknowledge it but move past it so that your functionality and general quality of life aren't tremendously negatively impacted. There are some lifestyle things you could try for better managing the anxiety, including diet, sleep patterns, supplementation, etc. And there's also cognitive behavior therapy (CBT) which can help some people tremendously with anxiety and behaviors like OCD that are borne of anxiety. In the end, if this (or any) relationship is important to you and you're aware that your anxiety is negatively impacting it, then it would certainly be worth the time and effort to take care of yourself in this regard and try some new things for helping quell the anxiety. For many of us, it can be a little like throwing spaghetti against the wall and seeing what sticks, as no two people are quite the same when it comes to brain chemistry or lifestyle so what works for one may not work for another. But don't get too discouraged or give up; you'll figure it out! Take care!

Frequent urination is a big tell for PANDAS/PANS, and as I recall, it has something to do with the nerve receptors for the urge. If you search the forum, you'll find a number of threads on the issue, one of which is linked below: http://latitudes.org/forums/index.php?showtopic=22652&hl=%2Burinary+%2Bfrequency#entry173924 I would proceed with PANDAS/PANS testing: bloodwork -- immune panel complete with ASO and anti dnase b titers, and the Cunningham test, if you can access and afford it (probably not covered by insurance). A negative strep swab is not, unfortunately, definitive proof of no strep; sometimes the swab isn't done properly, and the strep could be located somewhere other than the throat, too. Good luck!

So sorry, Tracy. If you've been dealing with it this long, I'm sure you've heard it all, looked into it all, tried it all . . . Just wanted to say, sorry you're still dealing with this, and it can, WILL get better . . . it's hard to see the light at the end of the tunnel sometimes, but it's shining, nonetheless. Just waiting for the obstacles to get out of the way so that you can see it, even if only just the tiniest bit. So, even on the antibiotics, your DS is still depressed, negative, irritable? So, what is it in a positive sense that that abx bring to the table at this point? Maybe it's time to wean him off? Increase his probiotics so his gut biome can start to heal? Hang in there!

Johnsmom -- Colitis is autoimmune, no? So, is it possible his immune system is just plain old topped out? Glass filled up slowly over the last while, and now it's just on a constant state of overflow, what with the colitis and all? Based on our experience (DS on a "low boil" for years until he hit 12/puberty, and then that last encounter with strep sent him way over the edge), hormones might play a role, too. I think they're generally inflammatory, so they more than likely aren't helping, at a minimum. Are the steroids helping? My DS's most dramatic decline was strep-induced, but he's had hyper-immune issues practically since birth: GERD, chronic ear infections, allergies. Chronic state of inflammation that eventually resulted in runaway OCD and anxiety. For us, getting off that merry-go-round was a lengthy odyssey of figuring out how best to head off every inflammatory trigger we could figure out, from strep to the seasonal allergies, and how to keep his anxiety at a manageable level long enough to let his blood brain barrier begin to heal and restore its impermeability so the crap that shouldn't have gotten through it in the first place wouldn't anymore. He's improved and been generally good for a few years now, but we still have to manage his unfortunately natural tendency toward an inflammatory state and situational anxiety which can result in a return to some OCD. I continue to hope that perhaps, in adulthood, his system will finally settle down permanently. But until then, he's happy and fully functional and continually developing better skills and strategies for heading off any approaching anxiety on his own, so I'll take that. Good luck to you. I would hope that between your DS's GI and the immunologist, you'll be able to narrow down the culprit and meet it toe-to-toe!

I think the developing theory behind PANS/PANDAS is that there may be any number of infections triggers that could lie behind the autoimmune cascade that results in the PANS/PANDAS behavior set (anxiety, OCD, tics, etc.). Strep just happened to be the first documented one. Myco pneumonia, Epstein Barr, strep, lyme, lyme-related co-infections, even mono might lie behind the condition, and if a susceptible person were to be subjected to more than one trigger in a short time period? Yikes! The other thing to keep in mind is that, perhaps one illness set things in motion (strep or otherwise), and you thought you got through/past it, only to have a behavioral decline again several weeks or even months later, in the absence of any identifiable illness. That's one of the insidious possibilities with this disorder: that once it has gotten a toe-hold, other, completely unrelated "immune events" such as allergies or mold exposure, can trigger a fresh exacerbation. Have you had immune testing to measure various titers and immune function? Perhaps that will give you some additional information to work with.

Not to hijack the thread (thanks for a great article, LLM!) . . . TMom and LLM, congrats on your success with your oldest kids! Hopefully, reveling and basking in that glow will give you the additional strength and resilience you need to get your younger kids where they need to be. From our personal experience, I do think there's something to the sense that they can "grow out of it," at least to some extent. All the best!

Ladymavs and Wombat -- Just a note that, as our DS got older, though we and his therapist still implemented many of the CBT/ERP strategies, these obsessive thoughts were the hardest to eradicate. In the end, we decided to try a different kind of cognitive therapy called Acceptance and Commitment Therapy (ACT) which appealed to DS because it is based upon mindfulness and gave his brain something else to work with rather than those annoying "bad" thoughts. It might be worth exploring: https://en.wikipedia.org/wiki/Acceptance_and_commitment_therapy All the best!

A number of us here on the forum have found that the strategies in Ross Greene's book "The Explosive Child" can be really helpful in getting through these behavioral "hangers-on" once our kids have healed well enough to put the strategies into play. Congratulations on coming this far, and all the best on the rest of your journey! Nancy