MomWithOCDSon

Sorry for the tough spot, MDmom. It sure stinks. Would your DS, maybe, read "Brain on Fire" himself? If not the whole book, maybe a couple of the passages where she describes, almost verbatim, that "turning back of the pages" stage she went through herself? I remember finding that, among a few specific points, really affirming, given how much resonance it has among the PANDAs community, as well. Probably the key thing is to try and help him keep from getting too demoralized by the current state of things . . . to continually reiterate that "this too shall pass," and that it's just part of the healing process, annoying and frustrating as it is. Tell him he's the recipient of many, many cyberhugs! Being 15, he probably prefers those over real ones, anyway . . . at least from "strangers"!

I missed the interview, as well, but the movie has been on my "short list" for a while now, mostly because of all the award buzz. I don't go to the movies to catch films anymore, what with On Demand and a big screen TV at home and significantly less expense and hassle, but a girlfriend of mine actually suggested we should catch this show together, and now I know to definitely take her up on it! Thanks everybody!

Hi -- My DS, now almost 16, went through a tough time at around 13-14, also. At 12-13, he received an Asperger's dx from two docs, but they have since opined that he no longer fits the criteria and have removed that dx. Still, he's always been a little "quirky" . . . marches to the beat of his own drummer, if you will. His comorbidity in the past, however, has been Asperger-ish combined with OCD, rather than TS. I do think puberty and the need to start to feel independent and in control contributes to the behaviors and the conflicts, especially with parents. Ultimately, though, we found out that our DS was also impacted by an auto-immune response to strep (almost an allergy, if you will) that contributed to an explosion of these behaviors at the age of 12 (PANDAs); once we got that under control, the behavior started to settle down and return to where he was before -- still a little quirky and faced with some OCD behaviors, but fully functional, happy and reasonably compliant. I'm just wondering if you've investigated the possible role of infection and/or auto-immune response in your comorbid child, since it sometimes gets misdiagnosed or goes undiagnosed altogether? Anyway, assuming that you've ruled out any other possible health impacts on your DS's behavior, I might suggest one or two things: 1) Ross Greene's book "The Explosive Child" has some great tools and techniques for conflict resolution that work even with older kids. Basically gets everyone -- parents and kid -- to "buy in" to the process and come to concensus, lessening the need for rebellion and improving communication. It worked great for us in those bumpy 13-14 years. 2) I don't know if Lamictal is ever recommended for kids with TS, but being prescribed this medication began a true turning point in our DS. It is an anti-seizure medication that is also supposed to be a glutamate modulator, and it almost immediately helped our DS to view issues from a less emotionally-charged place . . . to step aside and evaluate a situation and himself without holding on so tightly to that outsized sense of "what's fair" that he had a tendency toward and that underlaid so many of his arguments with DH and me. A few thoughts. Hope things improve for you soon!

Sorry T.Anna. It sounds as though you're on the right path, but you and your DS, especially, may be in need of some "triage," some temporary relief from the overwhelming anxiety and compulsions until you can get him in for the IVIG. Is he still on antibiotics? How long was the steroid taper? Will your doctor prescribe a longer steroid course? Since it appears the steroids provided some relief, have you tried other anti-inflammatories on a regular schedule, like ibuprofen? You might consider some temporary, fast-acting, calming medications, like valium, clonansepam, Zyprexa, etc.; I know a few others here have had to resort to these for temporary relief, awaiting other interventions to become effective. I'm not a big fan of frequent or long-term use of these, and I don't think they "correct" anything, really, but they can help tamp down things for a period and allow your child -- and the rest of your family -- to rest. Zyprexa -- even a very low dose -- put my DS to sleep for a full 10 hours. At first it was alarming, but he so badly needed the break from his compulsions at the time, that in the end it was blessed relief for that one, brief period. Did not like its impacts on him on an ongoing basis so stopped using it after about a week. Was it you who posted previously, looking for local hospitals that might be PANDAS-savvy and ready to help you and/or your DS if you walked into the ER? If not, then perhaps you'll get some responses from some locals who can guide you in that respect. Frankly, it's not just in Boston -- PANDAS families have had some similar issues here in the Midwest -- so I would be very careful about walking into a situation where you don't know how receptive and/or savvy they are, and they don't know you or your DS. They are all too likely to dope your DS up with psych drugs and stop there, without digging deeper into his condition, or acknowledge your request that they do so. At least if you and your DS's doctor administer a psych drug like Zyprexa or valium yourselves for triage purposes, you'll be in control of the cessation of its use and continuing to get your DS down the path of effective treatment via abx and/or IVIG. Again, so sorry. We've been there, and I know it can be a dark, painful place. It can and will get better, but you may need some atypical and/or creative assistance along the way. Sending warm and prayerful wishes for recovery your way!

DeeDee -- I have very little to add to the excellent ideas and advice suggested by LLM and Arial . . . in your shoes, I'd be ready to try either idea or both! I will say, with OCD-oriented issues and our strong-willed, intelligent, teenaged DS, unfortunately, "consequences" seem to make more impact than "incentives." Bums me out a little, actually, because I'd really prefer to reward his good efforts over having him face consequences for his lackluster ones or complete lack of compliance (rarely, but it happens). So, the only sort of "amended idea" I might add would be, if he turns you down on the new car or boat, you might be in the position of having to consider what privileges he currently enjoys that you might consider curtailing in order to encourage his participation in therapy. If he has to face the "shrinking" of things he already enjoys and inherently values, that might speak louder than some sort of "far-off" goal, getting the prize only after he's mastered the obstacle course, which can seem abstract and like a huge drag! Our DS remains a Man of Immediacey, so anything too far down the road, he generally lacks the ability to view it as a tangible, obtainable benefit. But hit him with the loss of 30 extra minutes of play time on a Friday night, and that's a wake-up call! I'm also thinking there might be some "exposures" you could implement at home. You say he eats alone . . . even at home? Or is this just with respect to peers? If it includes family, maybe you can "expose" him to sharing his eating space at home (wherever that is) with another member of the family; so, for instance, I'm thinking if he eats in his room, you quietly come in with your dinner plate, too, and take a chair or a corner of his bed and eat with him. He doesn't have to engage in conversation or even acknowledge your presence, but he doesn't get to be entirely alone. Then you could expand upon that, bringing in Dad, a sibling, etc. until he's willing to actually share family meals with his family. If it only involves his peers, however, is there maybe one or two good friends he has who are on the mature side, solid and accepting of eccentricities or quirks? My DS has a couple of good friends like that who are really good at "rolling with the punches," and they've helped us with exposures a time or two. Maybe you throw a pint-sized pizza party in a "safe space" for your DS and just one friend, initially, with no video games or movies or anything else available until everyone's consumed at least one piece of pizza? His friend cracks a joke or two, or maybe just eats quietly while your DS pushes through whatever fear is at the root of this behavior? But with the terms and conditions laid out for everyone in advance, there are no surprises or "embarrassments" because everyone's on the same page going in. I know you'll get through this . . . you're a great mom, and you've done such wonderful things with your DD! Hang in there! Nancy

My DH has tried SamE with success; however, it did not work well for DS.

Hi Cobbie -- I don't have an answer to your question, but I have wondered the same thing ever since I found out that the full dosage (at least for adult-sized folks of 90+ pounds), for conditions such as sinus infection, etc. is 4,000 mg./day. I will say, though, that I also found many, many reports of significant gastro-intestinal issues while on that dosage, so maybe it is a blessing in disguise. There was a similar line of inquiry previously . . . maybe a year or so ago? . . . and I think someone was getting the full, adult dose prescribed by their doctor. The thought was that it might speed up the recovery/healing, I think? Maybe you can search and find that thread . . . get in touch with that person (sorry, but I can't remember who it was). Frankly, I think most of us . . . and our doctors . . . have been guided in XR dosage by "Saving Sammy." I know that was my starting place, and when our pediatrician said she didn't have any protocol for PANDAS treatment, I gave her a copy of the book and she agreed to try the same prescription and dosage. It would be great if we could get a solid treatment protocol down for this illness, but I suppose that will have to come after we get everyone to agree that it is a viable diagnosis in the first place!

DS takes zinc, D3, E, QBC (a quercitin, bromelaine, Vitamin C blend), olive leaf, NAC and probiotics. Last year DH and I both got that horrid norovirus; DS went untouched. This year, the flu has been going around his school like wildfire, including a couple of his teachers that he likes to spend one-on-one time with. The adults were out of school for in excess of a week each; I'm not sure how badly it hit DS's peers or for how long. All DS came down with were basically cold symptoms -- congestion and a low-grade fever for about 24 hours. He missed one day of school and then was back at it. Here's hoping you get well and stay well!

Hi Kathy -- I don't know your DS, but it sort of sounds like to me that he's either reluctant or possibly even refusing to "buy in" to the ERP, especially if Rothman couldn't get through to him. And maybe you and/or your family are inadvertently making it "comfortable" for him to do that? I mean, if you make sure to cook him or to have on hand the 5 things he'll currently deign to eat, for instance, then you might be supporting his avoidance of the other 105 things he could be eating instead, no? And if you give him a lift to somewhere he wants/needs to go when he's unwilling to drive himself, ditto? Or maybe you are not in any way accommodating your son, and he still makes the avoidance choices, at the expense of things in his life that, in his shoes, you or I would find unbearable, but he deals with because he finds that preferable to facing those anxieties/situations? I know my DS went through a period in which he refused to see the OCD as any kind of problem, as something he was willing to actively work against; rather, he made justifications and rationalizations for it, and would argue on its behalf, rather than face the fact that it was hampering him in his life. We attended a session at the IOCDF conference a couple of years ago that featured a panel led by Dr. Storch from Rothman and included several members of his team. The message was pretty clear that, with older kids, if they're not participating in the ERP (which would lead to a lessening if not a cessation of the avoidance caused by OCD), then there has to be consequences for that. They cited a case study with a teenage boy in which he lost privileges (screen time, keys to the family vehicle) until he got with the program. Another example of the ERP/family participation/tough love component. For our DS, the main issue was the time that the avoidance was sucking up into its yaw! There were some things he'd prefer to avoid but were non-negotiables (showering, brushing teeth), so he'd get them done eventually, but he would take 5 times what a "normal person" would take to get them accomplished. Try as we might, we could not seem to get him to recognize how much of his own valuable time (hanging out time, video game time, sleeping time) he was handing over to the avoidance; we kept pointing it out to him, and the being forced to partake in the task (non-negotiable) was its own exposure exercise, but night after night, day after day, he continued to throw hours down the proverbial drain. So, we had to come up with a consequence that meant something to him, that he could feel the impact of. And we had to be relentless and consistent with it, too. We sat down with him and agreed upon a "reasonable" time for each of the avoided tasks; it was usually at least double the time DH and I thought of as "normal," but it still represented a sizable time-savings over his current record, and we all agreed that, as he got better at moving through the tasks with greater efficiency, we would continue to shrink his allowed window. The consequence if he blew his allowed window? His weekend bedtime/curfew got moved up 10 minutes for every 10 minutes he "blew". So, instead of being allowed to hang out with a friend until, say, 11 p.m. on a Friday night, there was one Friday on which he actually had an enforced turn-in at 9 p.m. That finally spoke volumes to him, and he began to power through some of the avoidance. In the end, most times with our DS, it comes down to us drawing a line in the sand as in "Your OCD may be able to push you around sometimes, but it is not going to push us. And if you're not ready to take the initiative yourself to push back and claim your life and your time for yourself, then we're here to help you learn to do that." The plan, like with most things with our kids, is for him to learn to manage it all on his own over time, and he's already come a good ways toward that self-sufficiency. It's a work in progress. So, I guess all that is a long way of saying, presuming your DS still lives with you and/or you continue to have a say in how he uses his time, conducts his days, etc., then you still have the opportunity to induce/persuade/require him to move forward with his life and exercise some control over the OCD. Of course, it's always best and preferable if the person with the OCD makes that decision himself and we're just there to support. But I've found sometimes it takes the consistent push-back by the "support crew" to let the OCD sufferer know that this is the name of the game . . . that giving up control and opportunity to the anxiety is too much of a waste for us to stand by and allow to happen. Hope that helps, if only a little. Hang in there, and hang tough!

Yep. Excessive avoidance = OCD. Been there, done that.

As a beneficial yeast, sach b. is impervious to abx and can be dosed at the same time if necessary. Though these organisms go by a variety of names, I do not believe that bifidus and Culturelle are the same organism. Rather, Culturelle is lactobacillus gg. Our pediatrician has told us, also, that lactobacillus gg will not succumb to abx. Bifidus, meanwhile, appears to most regularly appear alongside acidolpholus in combined supplements and yogurts such as Activia, etc. I don't know definitively about bifidus, but I do know that abx will kill acidolpholus. That's why keeping our kids on yogurt and kefir during abx regimens is not sufficient in supporting their gut flora. Generally speaking, it's probably wise to space out abx and probiotics, whatever the form, in the interest of giving the flora the best chance of surviving and successfully repopulating the gut. That being said, if you're looking for something that you can dose concurrently with abx in all circumstances, I know sach b. to be a safe bet, and Culturelle may also be an option.

To my knowledge, the only form of Florastor available is a single-organism form: sach b. Bifidus is also known as "lactobacillus bifidus," and I see it mostly combined with acidolpholus rather than sach b. You might just poke around on the web or on some nutrition sites (even Vitamin Shoppe) and see what you can come up with, as there are a kajillion probiotics and probiotic blends out there! If the doctor specifically wants you to avoid some strains with your DD, though, perhaps he can suggest a particular brand?

Most ERs and hospitals neither understand PANDAS nor have a protocol for it. Unfortunately, I've only heard horror stories from going through a standard or ER admissions process, no matter where it was. If you do not have a doctor who will actually admit your child and call the treatment shots, unless your safety or the safety of your DS is in eminent danger, I would avoid the ER as it is very likely a straight shot to the psych ward and psych drugs. Do you have abx in the house? If so, start dosing your child. Do you have a doctor who will prescribe abx or a refill? Call them, call their answering service, get that prescription and fill it pronto. Dose ibuprofen. Maybe try an antihistamine and/or melatonin to slow his brain down in the meantime. I'm sorry you're going through this, and I wish I had more positive feedback for you. Perhaps someone from your area will yet chime in with a more positive response and be able to direct you to a hospital that will, in fact, help you. Hang in there!

Lilly -- While we did not have a poor behavioral response to NAC, I think if you search "NAC" here on the forum, you'll see some other posts from families who've tried NAC and have had similar responses to yours. So if you can isolate that the NAC is the only thing that's changed in terms of your protocol and your DD is behaving differently, then it might well be the NAC. One theory is that because NAC can act as a biofilm buster, using it is releasing some fresh toxins or microbes and/or contributing to die-off, and this is aggravating your DD and resulting in the behavior. You could try riding it out and see if, as she adjusts to the NAC and/or the biofilm issue is resolved by NAC use over time, her behavior improves. On the other hand, if you see no positive behavioral benefits at all, then it may be the wrong supplement, or the right supplement at the wrong time (again, if you search, you'll come up some discussion about methylation cycles and why NAC may be beneficial to some and not to others based upon the "health" of that methylation cycle in one's body). Long way of saying . . . your DD's reaction is not unheard of. Sorry.

Hayley -- My DS hated art class also, and I think it was "just right" and/or perfectionism OCD with him, as well. Particularly during PANDAS exacerbations, his small motor skills (handwriting, drawing, scissors) are one of the first things to "go," and then just the activity itself can be excruciating, never mind the fact that he finds the end-product sorely lacking as compared to some of his peers' work or the piece the teacher would present as an "example" or "inspiration." I think letting art class attendance go might, unfortunately, only support her fears; OCD has a way of turning support around and using it as validation of the fear. She's right to feel anxious about art class because she isn't good enough at it, and your letting her skip the class says that you feel the same. You know that's not the message you intend to convey, and somewhere in her rational mind, your DD knows that, too. But if the OCD's volume is turned up in this particular corner, she doesn't hear that rational mind all that well right now. I'd work with a therapist for some specific ERP exercises to help her better negotiate the tasks she's asked to undertake in art class. I'd also have a talk with the teacher to investigate the dynamic between her and your DD and also get a better feel yourself for how this teacher works and communicates with her class. If she, as your older DD suggests, is indeed strict and rigid, you may need to help advocate for a greater measure of flexibility toward your DD, at least for the short-term, while you work on teaching her how to handle art class in general, and this teacher more specifically. Unfortunately, for any kid, it's sort of a rude awakening when they hit that first teacher who's lacking the warmth, sense of humor, etc. that they may have come to expect from their earlier grade experiences. But as we told our DS, teachers come in all shapes and colors, just like people, and sometimes you just have to learn how to handle yourself as best you can in the face of someone who doesn't appear to "get" you or maybe even care about you and/or your progress in the class. Stinks to have to explain cynicism to a second grader, doesn't it? In our case, it was also second grade and it was a poor PE teacher. But I'm betting you've been through some of that with your older DD, as well. Another sort of adjunct idea would be to check out some art history books in the library . . . the kind that have lots of pictures of art throughout the ages and, in particular, go into the modern art periods. We sat down with DS and showed him this vast array of very famous and divergent art . . . from Renoir to Pollack to Warhol . . . and let him talk about which pieces he liked and which ones he didn't, which ones he thought looked like they were done by someone who was "good at" art, and which ones looked like maybe they gave their dog a paintbrush and told him to have at it! It created an opportunity for us to talk about the subjectiveness of art, to crack jokes and laugh at some of what we found, and to plant the seed that how what he may think is "better" because it looks more like the teacher's example wouldn't necessarily be seen as "better" by others . . . that there's a great deal of individuality and creativity in making art. It seemed to help him get over the "perfectionism" hump a bit.

Hey Dut -- I don't think the course with PANDAS is ever smooth. So even once we were "back in," going to school daily, there would be those days that DS would seek to get out of it. He'd pace and pace, performing a host of mental rituals before we could actually force him out the door, the anxiety of managing himself was so pervasive at points. Plus, Friday afternoons became "Mental Melt Down Day." After keeping it together for a full 5-day week at school, it was like he just didn't have the mental energy anymore. So he'd come home from school Friday afternoon and almost literally crumble into a ball of quivering flesh. Everything was a big deal, nothing made him feel like he could get on with his weekend, because he had to rehash and confess and express regret about every little thing -- every unfinished homework assignment, every time he spoke out in class without raising his hand, etc. -- that he'd done all week. DH and I followed through with all the ERP homework and responses the therapist gave us, but in the end, DS had to buy in and participate. And for a while on Fridays, that just did not happen. Like all the other anxiety-oriented behaviors, this faded over time and we see very little of that these days. Still, though, he'll occasionally get home on a Friday and work himself up about whether or not it's okay for him to "let go" and do something fun Friday afternoon and night, rather than hit the books. Stinkin' overachiever! I agree with Eileen (surprise, surprise!) again on the night time curfew, though. Like her kids, bedtime is non-negotiable. No matter how much more work he needs/wants to do, no matter what's on tap for the next day, Bed Time is Bed Time. We know from experience that without a sufficient amount of sleep, his anxiety ramps up exponentially. So staying up an extra hour or more to complete homework is not a good trade-off for him. Truth is, now that he's in high school and taking high-level courses, the work is NEVER done, and even with accommodations, he never finishes everything. So there's literally NEVER "nothing to do" when it comes to school work. This has brought to bear a whole new level of exposure-oriented work for him . . . to learn to manage his anxiety about being less than "perfect" when it comes to satisfying every requirement of every teacher in every class. Frankly, I don't know how "normal" kids do it, expectations get so gianormous in terms of work production in these Honors and AP classes! Also, we insist he make it to school every day, no matter what, no matter what complaints (physical or otherwise) he may have unless he's actually displaying a fever or some other sign that his reluctance is entirely physically based and not just his anxiety at work. Truth is, not only does avoidance tend to feed upon itself and become that famous "slippery slope," but we're doing him no favors (nor he for himself) when he misses a day at school for less than solid need. It just gives him additional fodder for feeling anxious: he's missed an Algebra quiz or a Chemistry lab; he doesn't understand this Economics assignment and now can only communicate with the teacher via email, rather than talking directly with her, etc. So avoiding school, in the end, becomes a lose-lose. Thankfully, he's come to see that for himself now! Finally, I think Eileen's idea about getting out and about on the weekends, too, so that stepping out the door Monday morning is not such a big deal, is great; we did some of that, too. Actually, we had assigned exposure exercises at restaurants, food courts, movie theatres, etc., so there was always somewhere we needed to go! But just the act of staying out in the world, I think, breaks that tendency to think of home as a "cocoon" where you can indulge your OCD or anxiety and turns the outside world (school, etc.) into a forboding place where everything increases your anxiety and you can't find the internal tools for contending with it. Hang in there!

I agree with you, Eileen. And I, too, think we largely "wasted" some valuable therapy time and money on psychs and therapists who were not fully up to the ERP task. I also think my DS is a little extraordinarily difficult to impact (Dr. Storch picked up on this with him a bit, as well), whether that's entirely due to processing or duration of his OCD diagnosis and "coping behaviors" prior to the PANDAS dx or whatever, I'm not sure anyone knows. But did we see results fairly quickly once we found the right person and got him in the school? Yes! Like you said, every day a little better. By the end of about 2 weeks, we had him attending 2 classes, rather than just the one. And it kept extending from there; overall, it took us about 3 months (including Winter Break) to get him successfully back into school for his full, 9-period day. Again, maybe given his age, he never actively "resisted" the exposure; he'd just do it and then proceed to tell us and the therapist why it wouldn't "work" at school, even though it was working in another setting. But once he was inside the school itself, the excuses/rationalizations had nowhere to roost. I'll just say, if I had it to do over again (pray not!), I, too, would pack our bags for Florida and USF. They seem to have such a great handle on these kids in nearly every respect, including ones like my DS who may bring an extra little "twist" to the therapy experience!

But what did she think was "bad" about the bacteria, necessarily? I mean, our guts are FULL of bacteria, most of which is beneficial. So the fact that a food or drink might contain "bacteria" isn't, in and of itself, justification for avoiding it, is it?! Okay, the possibility that some yogurt might contain strep thermopolis, I get. If your kid has a strep issue . . . though even the PANDAS experts seem split on this particular issue . . . maybe it's best to avoid that. But cheese is FULL of the bacterium that actually contribute to it becoming cheese (including strep thermopolis), and she didn't mention that at all?! Sorry, T.Anna. I wouldn't want you to get disillusioned with everything, but this particular doctor -- based on what you've shared thus far -- doesn't seem deserving of a whole lot of confidence, IMHO. Time to move on to another doctor who makes some sense and will more thoroughly explain their protocol?

Good points, for sure! And, in addition to the actual "exposure" of going to school and being in the school building for intervals, we had a good therapist undertaking the individual "sub-exposures" with our DS -- giving him instructions on how to do something but intentionally starting in the middle of the instruction so that DS "missed" some of it, for instance. Those individual exposure exercises no doubt contributed to his overall success. It's worth mentioning, though, in the event someone else's kid has a similar profile (a certain level of "cognitive inflexibility"), that my DS processes things very "specifically," so while he participated in the exposures outside the school setting with a therapist and would frequently "ace" those exposures in just a few tries, he remained convinced that it would be "different" at school, in the building, in the classroom, with the teacher, in front of his peers, etc. So, for him, undertaking many, many exposure exercises in front of strangers in the corridors of the therapist's office building, in the building's common washroom, in the food court of the mall, etc., failed to "unlock" his power over the anxiety. School was "different," the adults and kids there were "different" from the kids and adults on whom he practiced his exposure exercises. We tried video looping exercises, also, but he stalwartly insisted that he was "different" from those other people participating in those behaviors in front of him, so the extent to which he was desensitized by watching them appeared to be neglible. So, in the end, it was in getting him into the building itself, experiencing the people and events via "in-place exposures" that eventually worked for him. Those experiences weren't something he could argue against as being "different" or something outside his own; they were very definitely his alone. In the end, I whole-heartedly agree with ERP and its value in combatting anxiety. And though we've never been to USF, I've spent quite a bit of time listening to and talking with Dr. Storch regarding my DS, and I have every confidence that USF is a fabulous, likely unparallelled, resource for helping kids and families in the face of these anxieties. I also know from experience, meanwhile, that while the basics of ERP are somewhat fixed, the application of the principals can and probably should be flexible in meeting each person's needs. So while loop tapes and exposures in different settings will work for some, "tweaking" of these primary tools, or "in-place exposures" may be required for others. Maybe in our case, DS's history, age and cognitive processing each contributed to his need for some different measures. At any rate . . . viva la ERP, wherever and however it is undertaken!

From what you've said, though, I get the impression that, when he "collapses" or has some sort of meltdown, you remove him from the environment, no? Part of ERP -- Exposure Response Prevention -- in addition to the Exposure part -- is the preventing of the response. I'm not sure what "collapse" means, as is he losing consciousness? Is he losing muscle control so that he won't stand or walk on his own? The "Response Prevention" would have to be designed to fit the specific realities of his response. So, for instance, if he's dropping to the ground and refusing to walk any further, perhaps he needs to be escorted into the building with support on both sides, holding his arms, so that he can't physically slump to the ground. He gets into the building, into the designated classroom, at all costs. How many times have you gotten him actually into the school, into the class or space you and the school have agreed he will begin this return? How long has he stayed there before you've allowed him to leave or removed him? Exposures can require repetition . . . sometimes more, sometimes less . . . to be effective. And, in our experience, the person needs to have attention called to their successes, also. Equal parts "tough love" (unbending exposure) and encouragement, identifying even the smallest successes so that your DS doesn't experience it all as trauma and drama . . . it's tough, but there's a reward in it in that he achieves a goal, and you validate his success because, in the heat of it all, it may not be easy for him to see those small steps in the right direction. I hope this clarifies it some? Sorry, but without knowing your DS or seeing precisely his reactions, I can only go by your words (and vice-versa, I realize ), so that makes it a little tough. Plus, I'm not a therapist, though I've been through a lot of therapy alongside my DS. Again, I think you need a good therapist to guide your DS and your whole family through this experience. Feel free to PM me, though, if I can offer anything further. Hang in there, and don't give up (or in)!

Doesn't most food . . . assuming it's not processed half to death . . . contain bacteria? What is her reasoning? I've heard about avoiding fermented foods before . . . was actually taken off them myself for a while because I was told they encouraged yeast growth, which I was attempting to reduce. So yogurt and sushi, I could get on that basis, maybe. But the others have me a bit confused.

I agree with 99% of what dcmom has said, but I do depart on a piece of it, as we have had a similar experience with our DS that you're having. Our DS was also school-phobic at one point and, like yours, he could not articulate any specific fear. I know some kids truly do have a specific fear (vomiting), and I think that probably makes tackling it and conquering it more clean-cut and, well, frankly, easier. But my DS, like yours, was just overall overwhelmed by a variety of things inherent to the school environment: sensory input, expectations, social mores. He wasn't afraid of any particular aspect; he was afraid of it ALL. So asking him to "name a fear" didn't make any sense to him. He was afraid he would miss some piece of instruction verbally imparted by a teacher. He was afraid he would forget a book or some material he needed for a particular class. He was afraid his peers would stare at him or tease him. He was afraid he would get an answer wrong. He was afraid he would touch something contaminated and not be able to wash quickly or thoroughly enough. He was afraid a classmate or a teacher would get angry with him. He was afraid he wouldn't be able to find a table/seat for his lunch period. And because there was a fear associated with almost every aspect of the school day -- classes, lunch, even his resource period -- it just seemed like a gigantic monster that he couldn't deal with. At least at first. Back to where dcmom and I fall completely in line, now: you need a good therapist. The fact that the psychologist you mentioned was "trying to talk him into" school tells me that this therapist is not the right one. This is not exposure therapy, which he needs and which has been proven to work. And you can't talk a person who's not fully in charge of their own thinking/executive functioning "into" something they feel great anxiety about. Rather, you have to desensitize them to that which causes them anxiety through exposure so that, over the course of a number of exposures, the anxiety decreases. So, if going to school (for any or all of the sub-reasons/fears that I mentioned earlier) is the fear, then actually going to school and managing himself while there, is likely to be the "cure" for what ails him. But I know that's easier said than done. We've been there, and without the help of a very good ERP therapist and wonderful school personnel, we might not've gotten past that point ourselves. I'm sorry you're going through this, and I truly encourage you to seek out a really good therapist. And I further encourage you to do some sessions or parts of the sessions as a family, so that you can learn some of the best strategies and techniques for helping your DS -- as opposed to enabling your DS's anxiety -- to take the next steps. As dcmom has said, it's not always soft and fuzzy, it's not always fun, it's not always "nice." But it works!

I would add sach b., or saccharomyces boulardii,(Florastor or less expensive brand, like Jarrow). Sach b. is a "good yeast" that helps crowd out "bad yeast" and it's fairly impervious to abx, so it can be dosed simultaneously, if necessary. Culturelle is good, but it's only one strain of organism (lactobillus g), and there are kajillions other beneficial micro-organisms that our guts like and need. Especially when taking abx, which tends to kill off many of the gut bacteria strains, I'd just keep a variety coming, if possible.

Lyme Literate MD (Doctor)

My DS suffered from all three of the behavioral manifestations you've mentioned, at one point so much so that two different docs diagnosed him with Asperger and PDD-NOS. He stuttered, repeated words, couldn't finish a sentence, started over and over again. Walked dragging one leg behind him. Has never had trouble looking people in the eye, but could not read facial expressions or body language. These behaviors slowly disappeared once we started abx. The leg-dragging was the first to go, and the language and social things seemed to sort of improve together. In the interest of full disclosure, though, we also had DS in counseling/social work for the social things, and I'm certain that helped him learn (or relearn) to "tune into" people more effectively once he'd healed sufficiently. The two doctors who'd originally given him the Asperger's and PDD-NOS diagnoses later removed them, frankly a little flummoxed by how much of a turnaround they saw in DS in a relatively short period of time. Now, he still can get ultra-focused on something of his interest, to the exclusion of most everything else, so there's still something of that Asperger-ish quality to him at times. So I tend to think there's something genetic or organic in that pattern, and the PANDAS exacerbates/exaggerates those characteristics?