MomWithOCDSon

I'll be interested in the answer, too, Trinitybella. The only way I've heard of "testing" neurotransmitters is PET scans which, from what I've seen, can illustrate where concentrations of certain ones sit in the brain. And then there's the Pfeiffer "scale" with respect to being histaminergic (excess of insufficient brain histamine levels), but that, so far as I know, is a clinical tool (behaviors, reactions to various interventions, etc.). Good luck!

Ooohh! Good question! Personally, I've found that in this PANDAS path, sometimes a trade-off is worth it; sort of, "the ends justifies the means." Our path started several years before yours, so there was less information, less documentation, less support for a "controversial" diagnosis like PANDAS in the beginning, and if I'd turned my back on every practitioner or caregiver we'd had and used who'd not only failed to bring PANDAS to OUR attention, but flat out denied it's existence even when I brought it up, well, we'd have had no one left to help us on any level. It sucks, but at the time, it was a reality. In the end, as I learned more about PANDAS/PANS, I forced all my "knowledge" on them . . . I made extra copies of research papers, sent them snail-mail letters keeping them updated on DS's progress thanks to PANDAS treatment, etc. I'm sure they were annoyed at times and downright ticked off at others, but in addition to getting help for my own kid, I wanted to do what I could so that if they ever came across another kid like mine who went from happy and thriving at one appointment to a tearful puddle of dysfunctional goo just a couple of weeks later, they'd realize there was probably something else afoot and not just recommend more psych meds or extra therapy sessions! In the end, both of them came around eventually, if reluctantly. So, I think you have to weigh the pros and cons. The fact that your therapist didn't recognize the PANDAS, unfortunately, does not surprise me at all. In fact, despite the fact that the IOCDF has fairly recently (within the last 3 or 4 years) begun to embrace PANDAS/PANs, there continues to be resistance even among members of that group; some of the practitioners I've talked with are bucking it because they think it's a diagnosis that's being reached for too often, and that it is "rarer" than the parent population accepts. Is the therapist good and effective at the CBT? Does your child have a good, trusting relationship with the therapist? Is the therapist geographically and financially "desirable" (as in, reasonably easy to get to and accepting of your insurance or otherwise affordable)? If your answer to each of these is a resounding "Yes," then I think I'd give a temporary pass on having missed the PANDAS/PANs initially and make use of the skill set that counts when it comes to the CBT. But I'd make sure and keep them up to date with the PANDAS progress, call attention to the gains/improvements, share the video and research papers with this therapist, etc. Do what you can to make sure they don't miss it the next time it walks into their office!

Full immune panel (IgG, IgA, etc.), ASO (strep), anti dnase B (longer-term strep titer). I think methylation issues are a VERY worthwhile trail of exploration for someone your age dealing with these issues, and it appears from your signature line that you done that. So none of the interventions you're trying for the mutations has been effective? Wombat, I don't want to discourage you from exploring every available avenue, but as the mom of a now 18-year-old who was first diagnosed with OCD at age 6, didn't get a PANDAS diagnosis until age 12, responded very well to abx (brought him back from a totally dysfunctional brink), but continues to deal with some ongoing OCD and anxiety issues (though manageable) . . . I just want to encourage you to perhaps not get hung up on the testing and interventions tied to traditional PANDAS/PANs (rapid onset, pre-pubescent expression, abx, IVIG, etc.) and perhaps lean toward more "lifestyle" type interventions that will hopefully help make life more functional, more fun, and help you push away more of the OCD that interferes with your everyday life. If you do yet have underlying infection, be it lyme or strep, etc., then abx, IVIG, etc. will likely help you to an extent. (How long were the course of abx you've tried in the past? Can you get a longer-term prescription for them and journal your behavior patterns for a period of months? We found that, after the initial "burst" of palpable benefits, abx tended to yield more subtle improvements over time . . . perhaps unnoticeable to a majority of people, but by reading back through our journaling of things our DS used to do but didn't need to do anymore, or things he'd given up to the King OCD but had begun to resume as he improved). But just from our experience, having contended with OCD for as many years as you have, I would not want to lead you to believe that abx or IVIG will be a panacea -- a cure-all. And if either of them is to be effective, IMHO, given your age and the term of your dealing with this condition, I'd wager that that you would need a longer and/or more repetitive course of these medical interventions than might be the case for a younger, more recently diagnosed case (our DS took abx for about 2 years). Additionally, I would suggest dietary, supplements, ERP/CBT and perhaps even some prescription medications to help you gain more leverage over the OCD, even if only as temporary measures. In the end, the PANDAs tests and interventions turned our DS's life around, but even so, he continues to need supports. Whether that's because he was older and the anxiety/OCD was more entrenched by the time we determined the immune condition, or if it's because it's genetically part of who he is and the PANDAS just made it worse, I can't tell you. But I've made my peace with throwing everything at this monster that's at our disposal, and that methodology, in the end, has given my DS his life back. Keep fighting, keep searching and never say never! All the best to you!

Beerae -- I completely understand your denial here, but you are not psychotic . . . not even close! You're not even over-reacting! You've seen this before, so you recognize it. And the whole "rarity" and "what are the chances of two kids in one family" having an immune condition like PANDAS/PANS thing?! Your kids may be another increasingly common representation of just how "un-rare" these conditions are becoming among siblings and in the population in general. I don't want to freak you out, and I certainly don't wish PANDAS on your DS, though I think someone in your shoes at this moment might ponder the "what if's." What if it IS another case of PANDAS? Then you can get him medical treatment and control this, if not potentially put an abrupt end to it, before the anxiety and odd behaviors become a fixation for him. What if it isn't another case of PANDAS? Better to know that now, early on, so that you can find some therapeutic responses that help him contend with the anxiety, etc. Whatever the underlying cause, the quality of your DS's life is at stake to some extent as no mom wants to see her kid in tears every night or at meal time. I'm so sorry your DH, friends and family are not always supportive or understanding, but if you wait to the point at which your DS's behaviors become "abnormal" in all of their eyes as well as your own, he will have potentially suffered longer without care that could help, and his condition may become more intractable and harder to "undo." You've done wonderful things with your DD and you're wise to the ways of this PANDAS/PANs things now, so please trust yourself and lean on us for support if it's lacking elsewhere. You are the hero of this story, not the "crazy" anti-hero! You can do this!

Oh Beerae! I'm so sorry, but I think you need to follow your gut here. Maybe I'm still dealing with my own PANDAS PTSD, but I don't think your DS's behaviors reflect a "normal" kid (assuming there is any such thing). The whole not-eating-with-other-people thing initially made me think of misophonia, but then graduating to being concerned about throwing up, etc. starts sounding like full-on OCD thoughts and behaviors (DCMom's kids went through that particular brand of OCD). As for not having any recent record of illness, strep, etc., my DS was one of those asymptomatic strep responders (like Sammy Maloney), so he never showed physical signs of strep. But have you been notified of any cases of strep in your DS's class or school? He could be classically asymptomatic but responding, nevertheless, to an infection or exposure. Hang in there! But get some help, I think, as soon as you can. Whatever is behind your DS's increasing anxiety and behaviors, he needs some help sooner, rather than later. Better to rule out underlying/hidden medical causes, no matter what the case. Nancy

Ultraviolet light?

Bentushar -- I have an 18-year-old "man-child" who's been through the PANDAs experience, and it sounds as though you and he have a lot of similarities in terms of your childhood, "quirks," tendencies and diagnoses. My DS has, at various times during this journey, been diagnosed with ADD, ADHD, Asperger's and OCD; when he's healthy and settled in comfortably in his life circumstances, you probably wouldn't think he had any of those conditions unless you knew him really well and picked up on a few subtle, remaining behaviors/habits that he developed over the years as coping mechanisms. And, to this day, he's pretty socially awkward . . . until he gets to know you. My DS, not unlike you, likely had PANDAS for more than a decade before actually getting that diagnosis and being pulled back from a major abyss at age 12 via antibiotic treatment, therapy, supplements and some prescription medications, as well. Today he's in college and doing quite well, though he still gets anxious and still feels awkward at times and can revert back to some old OCD habits as a result of the stress. But he knows what he's dealing with now, he recognizes it, and he fights back pretty effectively and pretty quickly. A question I would have for you is, do you still get strep infections? And if/when you do, do you notice changes in the way your brain functions, or significant changes in your mood? Or do you feel "more" or any of the things with which you've been recently diagnosed -- ADD, autistic (I'm presuming this is high-functioning, so probably Asperger's?) -- when you're dealing with a virus or a cold? Do you have allergies (environmental or otherwise)? Or are you pretty stable -- pretty much the same -- most of the time, irrespective of immune issues? I've seen accounts by adults who feel they suffered from PANDAS growing up, and I'm one of those who's pretty sure I had the condition myself as a kid, though I went undiagnosed. So, I had behavior problems as a kid, and as an adult, it took me longer than some to find my way to a place of maturity, stability, coping with my anxiety in acceptable ways instead of acting out, etc. Now as my son enters adulthood, I'm grateful that he 1) has had an earlier diagnosis than myself, even if it was still significantly delayed, and 2) thus has been given coaching and tools for confronting remaining behaviors. What I don't know is if he -- or I -- will ever be anything other than what we are now, despite treatment. I don't know if the delay in treatment resulted in the brain forging these pathways that are either impossible or very difficult to undo, or if healing continues for years, once you find those things that support it, and thus we'll both be "better" as the years go by, though we've both reached healthy, functional and happy -- even peaceful -- as of today. What I do know, however, is that there are resources and research via the PANDAS family that helped my son grow into an amazing young adult, and I'll forever be immensely grateful. You sound like a very intelligent, articulate guy, so my guess is that you'll find the resources and tools that "speak" to you . . . that feel right, supportive, and effective. Wishing you all the best!

Lydiasmum -- We did experience that stuttering sort of speech pattern when DS was in the healing phase; very strange for us, as well, as he otherwise tended to be extremely articulate and well-spoken. But during one of these "spells," he would repeat whole words, repeat whole phrases or, like your DD, just stop while searching for the word he needed for what seemed like forever. He, too, has always tended toward the anxious and appreciates routine, advance notification of upcoming changes to his routine, takes a while to settle well into a new setting or situation, etc. I think this is part of who he is naturally, but when he was ill, it was definitely exaggerated. All I can offer in the end is that, in our case, the speech pattern issues did slowly fade away, for the most part. Even now, when he gets especially worked up, he can lose his train of thought with regard to what he's saying, but it is much more rare and isolated, rather than a continuing pattern. I'm not sure what's behind it, but I attributed it to the general executive functioning problems he encountered for a while during his illness. I can definitely relate to the PTSD . . . DS is in college and I STILL experience it! But you're wise and vigilant, and I don't think you need to take the speech issues as a sign of full-bore return of tics, necessarily. My DS had very few "tics" . . . his PANDAS was predominantly rooted in OCD . . . but the speech thing and a strange leg-dragging tic, along with a few other verbal things (like clicking his tongue), were evident in the depths of things. They've all faded to near non-existent over time, only to pop up in a limited quantity and duration if/when he gets heavily stressed. All the best to you!

Mommybee -- Unfortunately, I don't think it's that black and white, and some of the notes you offer, while commonly stated as fact by medical and psych practitioners, etc., simply are not true. "Garden variety OCD," again, assuming there is any such condition, CAN, in fact, be impacted by anti-inflammatory medicines and antibiotics, just as "garden variety OCD" is frequently, also, negatively impacted by inflammatory insults such as colds, viruses, etc. Psychiatrists have reported the latter regularly, and Dr. Rosenberg and others have published papers regarding the positive impacts upon OCD ferocity as a response to anti-inflammatory interventions. Meanwhile, with respect to antibiotics and "regular OCD," D-cycloserine, an antibiotic originally utilized as a response to tuberculosis, has been researched and reported upon for its positive impact upon OCD. We've all heard the "OCD waxes and wanes" mantra over and over again, but none of the practitioners I've talked with regarding this phenomenon can explain why . . . what's behind the "waxing and waning." That is, until our current psych who keeps current on research and acknowledges that, again, immunomodulatory "insults" tend to cause waxing of OCD behaviors, even in non-PANDAS/PANs individuals. Finally, as for PANDAS OCD remitting entirely "only to return again if the child is reinfected," I'm sorry, but I think you'll find many, many accounts . . . here and elsewhere . . . regarding "residual OCD" among the PANDAS/PANs population, particularly in older kids or kids who were unfortunately subject to a significant period without effective PANDAS intervention. Whether that's because the behaviors tend to become "learned" or "habits" that become harder to break the older the person becomes, or if it's because the immunological insult itself is extended or multi-pronged, I'm not sure anyone definitively knows at this juncture. Again, not unlike those who might not have an exceptionally high CamKII measure, or high or rising titers, I feel it may be a disservice to exclude these individuals from PANDAS/PANs consideration and/or interventions. I've met and spoken with Dr. Swedo on several occasions and have tremendous respect for her and her research. But it continues to evolve, as does this field overall. She's learned more over the last decade or so, and as a result, her position on several things has evolved and shifted, as well. Obviously, my view and position is rooted in my family's personal experiences, and I continue to learn more and follow newly-released research as much as I can. All of which leads me to continue to question . . . not definitively state, but certainly question . . . the increasingly arbitrary line between "garden variety OCD" and "PANDAs OCD." Just one mom's experience, reading and gut . . .

Yes, Albymom, presuming you accept the premise that there is any division to begin with. But it's also possible that CamKII scores vary among the population for reasons other than these kids being "PANDAs" versus "non-PANDAS" OCD sufferers. The research remains in its infancy, and while it's helpful to those who, like you, can demonstrate high CamKII scores and therefore avail yourselves of some PANDAs interventions, it may be a disservice to other families for which that relationship is not demonstrated but may still be suffering from PANDAs/PANs. We've seen this -- and documented it -- with respect to titer levels and rising patterns and PANDAs; some kids don't mount an antibody response that is measurable and thus recognized as a sign of PANDAs/PANs, but that doesn't exclude it as a possibility. As you read and review the research that's been mounting over the last several years with respect to the origins/drivers behind both OCD and PANDAs, you might be struck by some of the "coincidences" and cross-overs that even the researchers, focused as they are on their specific corners of that universe, don't immediately recognize. For instance, Swedo has included in some of her presentations in the past (haven't watched the 2014 one as of yet) a scan image of a boy with PANDAs whose caudate nucleus and putamen (brain sections) were enlarged, "swollen," prior to plasmapheresis, and then were reduced to "normal" size following the plasma procedure; his OCD behaviors were also significantly reduced following the procedure. Halfway across the country, meanwhile, Dr. David Rosenberg at Wayne State University Medical School was conducting research on pediatric OCD and, through PET scans, came to discern that the caudates of children with OCD contain higher concentrates of the neurotransmitter glutamate than do the caudates of non-OCD kids. So, is it a coincidence that the caudate is impacted in both PANDAs and "regular OCD," or did Rosenberg's sample of kids inadvertently include PANDAs kids that he didn't recognize as such? Has anyone else read Howie Mandel's autobiography, "Here's the Deal: Don't Touch Me!"? In it, Howie tells a story about this strange malady that struck him as a young boy where, on a vacation (to the beach, as I recall), he came down with this "infestation" of small, parasitic mites of some sort that burrowed under his skin, the treatment for which was painful and prolonged. It was shortly thereafter that his OCD began to rage, and he remains impacted by it today, 40 years later. Again, coincidence? Given as many of the "mental illnesses" that have been identified by medical science over the last several decades as yet have largely unknown origins, and based on our personal experiences, I continue to encourage anyone who's child suddenly manifests with a "mental condition" to explore and exhaust physical medical causes or contributors.

I expect it depends on the person, but I would expect that the time-release formulations (like Augmentin XR) might be gentler on a stomach than abx that aren't combined with a cellulose for gradual release?

We tried inositol but were not successful in finding a dosage that successfully addressed the OCD/anxiety. Either it was just too strong, or inositol would be required in copious amounts. As for dosage pertaining to adults versus children, I would look more to size (pounds) than years (age), as it is my understanding that persons of 90 pounds or more are considered adults for dosage purposes. If, by any chance, your son is 90 pounds or more, you could likely follow adult dosage parameters, though with any supplement or medication, I would titer up gradually and slowly and keep an eye out for the impacts. I also wonder if, given the comorbidities you've described (tics, OCD, ADD, etc.) if you've looked into/considered PANDAS or PANS? There's a large, very active forum here dedicated to that auto-immune condition and some of the key indicators of it are these comorbidities. It might be worth looking into. My son was diagnosed with "regular OCD" at age 6, but over time we were able to make the connection between his "waxes" and strep incidences, and it was ultimately PANDAS interventions that put him back on the road to health and happiness again. All the best!

trouble making decisions (yes, Melmix!) excessive erasures on paperwork quick frustration (result of perfectionism) extraordinary, non-age-appropriate, worry/concerns about things (will that chalk dust hurt my lungs? will the glue on my hand soak in through my skin and poison me?) withdrawal from social activities (fear that he/she won't do things/play "right") In our case during the elementary school years, that "flash frustration" was the biggest issue, and the teacher would sometimes attribute it to acting out or temper or whatever. But what it truly was was perfectionism and an enduring lack of satisfaction with his own work product. Even in kindergarten, he thought his art pieces were supposed to look like Picasso's, and his handwriting was supposed to match the Times Roman font displayed on the bulletin board at the front of the room! I whole-heartedly recommend Gail B. Adams' book "Students with OCD: A Handbook for School Personnel." It is excellent and an easy reference book that addresses not only OCD-variant behaviors that teachers are likely to see, but also the appropriate accommodations that can be made when those behaviors appear. I gave copies to DS's principal, social worker and school psychologist. Good luck!

Suzanne (BigMighty) -- Our DS does generally recognize his own exacerbations though he is not reactive to strep anymore, that we have seen (matured immune system, maybe?). His biggest medical triggers in the last couple of years have been allergies (mold and pollen), so when those kick up, he knows to go back to his OTC allergy medications, and we increase his quercitin supplements, also, in an attempt to fend off the excessive histamine production that can drive inflammation. Also, we are in fairly frequent touch via text and FaceTime; the FaceTime, especially, gives us a chance to see how he's looking, so were he to develop any tics or other obvious signs of exacerbation that he was attempting to hide, we'd still catch on, I think. Largely because of the whole PANDAS journey, though, he's very communicative and open with us, so I think if he was unsure as to whether or not something was a sign of an upcoming exacerbation, he would talk to me about it. As for the food thing, I think pretty much all colleges require incoming freshmen living on campus to have a meal plan at the college cafeteria and ancillary eateries, and they do tend to cater to young tastebuds, from what I've seen, as well as having salad and yogurt bars and the like, so I would think there'd be something there your DS would eat, even if his diet was very repetitive. But since food is a big issue for him, including the cafeteria and other on-campus eating spots on your tours would definitely be an important piece, I would think. Also, most schools make available to rent, or you can buy your own and bring, mini fridges and microwaves, so if there are some nutritious staples your DS could keep in his dorm room and eat regularly, I would tend to just stock him up, and maybe let Amazon keep him stocked if you're too far away to bring or send him regular "care packages." Our DS is a bit picky, also, and especially doesn't care at all for conventional breakfast foods. So I stocked him with Clif bars and dried fruits and peanut butter and other items that he'll eat willingly and that aren't so much trouble that he'll just skip it, either out of time constraints or sheer 18-year-old laziness. One other thing I forgot to mention in the original post with respect to helping DS maintain his health on campus . . . one of the accommodations we went for (with the help of our psych) was a private room accommodation; it was granted, so while DS lives on a hall with about 20 other freshman boys and an RA, he has a private dorm room, which we are thinking will help him maintain both his physical and mental health, at least for this big, transitional freshman year. In addition to not having to worry about strep or other illnesses spreading from a roommate to DS, it gives him his own space to come back to after a long day of classes and labs where he can do his own thing and continue being social only if he chooses to, rather than out of necessity with a roommate in the same room. He may make a friend there this year and they may decide to be roomies next year, but we felt that giving him this safe, decompression space initially was a good way to go. Good luck!

I've been conversing with a few other families off-line over the last couple of months as we prepared our DS for the transition from high school to college, and I thought I'd drop a note here in the event some others are staring down the barrel of college decision-making. I also wanted to make sure and thank a few of you who tread this ground before us -- most especially Emmalily -- and gave us some great advice! Thanks! So, for quick background, DS was likely "a PANDA" by the age of 3, but we didn't know, nor did we get any help with medical interventions, until he was 12 -- almost 13 -- and headed into 7th grade. He became so badly debilitated, however, that he went from fully functional if quirky to completely non-functional within the space of about 3 months. Finally, after almost two years of abx, lots of therapy, continued supplements, and tough love, DS returned to functional and managed to close out his senior year in high school summa cum laude. He continues to battle a degree of OCD and anxiety, particularly when under stress and/or transitioning to a new, unknown situation, but for the most part you wouldn't know he was any different from most bright, healthy kids. In our college search, thanks to some great advice by knowledgeable folks like Emmalily, we knew we wanted to find a college that: 1) offered a low average student-to-teacher ratio; 2) was within a reasonable drive from home; and 3) had a disability office that was readily accessible and pro-active, as well as, of course, offering the programs that DS wanted to study. One very valuable tool we also made use of was a chance for DS to participate in a short (3-week) summer program on a college campus the summer between his high school junior and senior years. It gave him the experience of living on a campus, keeping his own schedule, living and dining among peers, getting himself to class, etc., and we think that it had an invaluable positive impact on his confidence and coping when it came time to actually leave home for the real thing. We found his "dream school" about 1 hour away from our home with the curriculum he wanted (computer engineering). It's a smaller school with a lower student-teacher ratio (9:1) and a readily navigable campus. DS attended two, short, on-campus "readiness" events -- a scholarship weekend for interviewing for a variety of scholarships and a summer orientation session -- that once again added to his confidence that he could manage living on campus. We made advance contact with the Director of the Disability Office for the school and provided her a copy of DS's IEP as an example of the sorts of accommodations (extended time on assessments, etc.) that had contributed to his success in high school; she was very accessible and communicative and assured us that his accommodations could be met on campus via the Americans with Disabilities Act and that she would notify DS's professors. She also offered a "mentorship" program whereby DS would be "matched up" with an upper classman on campus to help him get in the swing of things. DS has had two brief subsequent one-on-one meetings with her since he's been on campus, mostly to fill her in on his classes and professors, to reconfirm which accommodations, if any, he feels he needs given the nature of the material and the teaching styles, etc. and to introduce him to his mentor. In short, she's been great -- available, but not intrusive. So, DS has been on campus since mid-August, and he's doing great! That's not to say there haven't been ups and downs . . . moments when he called me to say he didn't like this (the dorm showers) or felt uncomfortable with that (some social activities designed by his RA) . . . but he's figuring it all out. He likes his classes -- actually loves some of them -- and, knock on wood, is keeping up. He's making some friends and making peace with the parts of college/dorm life that he'd prefer weren't parts of the picture. In other words, he's adapting. Thanks again to all of you who've helped us on this journey, and here's wishing all of you happy and safe transitions as your kids continue to grow! Nancy

As you've probably found from your reading/research, PANDAS/PANs is unfortunately not limited to strep or myco, etc. Given as it is the result of a dysfunctional immune system, it seems entirely possible/probable to me that the staph/salmonella experience could have set it off in your DD. I would try to get in to see Dr. Murphy ASAP, as Chemar has suggested. She knows this animal quite well, and her staff at USF is well-versed in the sort of OCD behaviors and interventions that will help your DD function while her brain and body heal. All the best to you.

Yes, we definitely saw that with our DS in high school, as well. I tend to think it's partially developmental and partially because, as our psych explained it, the "dissonance" between "normal, acceptable behavior" and these flare behaviors tends to grow as a child gets older because of societal and peer pressures. What might've been more easily excused or accepted in terms of flare behaviors in a 10-year-old is less acceptable in a 15-year old, so it looks "more odd" coming from someone at that age. We found some additional help during these flares from three supports: 1) taurine supplements; 2) zinc; and 3) lamictal (or lamigotrine). The taurine helped his executive functioning so that he could focus on a series of tasks and not lose his place as he moved through, say, taking a shower or getting dressed. The zinc we've continued because it has some anti-ADD/ADHD properties and he's somewhat zinc-deficient to begin with. The lamictal was a different animal and tougher decision since it is a prescription med, but our psych felt strongly that it would help him, so we decided to try it; it did, indeed, help tremendously. Its an anti-seizure med that has glutamate-modulating properties, and his behaviors certainly suggested some excess brain glutamate mucking up his processing abilities. It didn't eradicate the OCD or anxiety, but what it did do was make it possible for him to get less worked-up about it and "spin out." Instead, it gave him the ability to be a little more objective about some of his obsessions and/or compulsions and to be less volatile when he was coached to "move on" or refocus. You've been on this road for a while, so I know you'll get through this. Hang in there!

I'm sure others will chime in here, and many have for more experience in this area than do I, but I wanted to make sure and keep the thread alive and can at least tell you what I've seen. When IVIG was first being implemented as a treatment for PANDAS, the thought was that a single high-dose infusion, perhaps two at the most, was all that would be required; there are still practitioners who generally follow that protocol, and there are children for whom it has been a successful treatment. However, for PANDAS suffers who have a documented immune deficiency (if your child has this, it should have been explained to you at some point), then regular IVIG treatments for a period of time are not atypical; but I would also think that, provided your child's blood work speaks to that immune deficiency, your insurance should cover at least a portion of the treatment. In the end, I think you're going to need to speak directly with Dr. B. for a fuller, better explanation as to the treatment protocol and the reasons behind it; unfortunately, I don't think that should have been left to the scheduler or receptionist behind his front desk.

Billn -- While I don't think you'll win the ideological battle with some on this, I say, trust your instincts. I heartily believe in the value of therapy (ERP), and unlike some, I even believe it has some merit even when our kiddos are not fully participatory and still in the early stages of healing, mostly because it can reinforce some strategies for the whole family and lay in the building blocks for not allowing the OCD to continue its "kudzu creep" of infiltration and control once the kid is returning to functionality. But I'm with you on the whole residential treatment thing, particularly for a fragile kid. I'm assuming this is NOT the USF program in which the parents and kids stay together in the evenings? Something more like Rogers Memorial where you drop the kids off and don't see them for at least a week? We were presented a similar opportunity with our DS when he was at his worst, and I did not believe . . . and still don't believe . . . it to have been a proper response. He would have felt abandoned and stripped of everything he was accustomed to being able to count on, and that would NOT have supported his healing . . . it would have decimated it. On top of which, through our years of therapy (off and on), I've learned that it's almost as much about training the family as it is the person with OCD. So packing the patient off and looping the family in with a few hours or a single day's session in how to handle OCD in the home, in the world, etc. once the patient returns home just doesn't make any sense to me, in the end. If you have the resources, I would try instead to set your DD up with regular therapy sessions while she remains at home with you. We wound up taking our DS for 3 sessions each week initially, with "homework" exercises at home. We eventually scaled that back to 2 sessions per week, then 1, then 1 session every other week, then 1 session per month or so. And now, he's no longer technically "in therapy," though we continue to employ the strategies we all learned at home and out in the world when we see the anxiety/OCD try to creep back in. These sessions won't be any fun, and she won't care for them much, more than likely, nor will she like the "homework," but at least she'll have the continued support of returning home with you and undertaking the homework in a known, more comfortable environment. All the best to you!

I didn't know that about that Natalie Merchant song! Cool! I like it, too. Continued happy/warm thoughts for you and DS! Finally, regarding the "rareity" of all these conditions? I can't help but think, "Rare, schmare!" I don't know if it's evolution or the way in which we're messing with the natural course of things through all of our environmental and food source meddling, but I don't think these truly are rare, or that, if they are as of today, they'll continue to be considered so in the decades to come. I think maybe we're just now coining terms and "labels" for many of these "conditions." I, for one, can look back at my own childhood and see many of the traits in my own history, as well as recall many "weird" kids I went to school with who would certainly fit much of the symptomology and/or phenotypes we're identifying in our own youngsters these days.

How's he doing?

Cyber hugs, cyber wishes and good vibes, all coming your way! We went through a similar experience back when DS was 9 or 10, and he handled it far better than we had expected him to; chances are, your DS will, too! Milkshakes and some VIP treatment go a long way, too, in helping him feel better! Crossed fingers!

You might try valerian root, which you can get either in capsule or tea form. Warning . . . it smells like a dirty athletic sock, but it does have calming properties. You might also try a lavender oil or lotion right at bedtime . . . rubbed on your hands or sprayed lightly on your pillow. I've found that it helps me, as well.

Glad to hear it, Bill. Keep the faith!

I think YES! Vitamins/supplements . . . in the cases in which our kids' systems are truly lacking . . . can have miraculous impacts! So glad you're seeing such great results! We're real believers in our DS's supplement regimen, too. In fact, to such as extent that he's been taking them fairly religiously (only a "skip" here or there) for the last four years. If it works, stick with it, I think!