MomWithOCDSon

Yes! We've had this for periods off and on ourselves. And it's been discussed here on the forum, as well . . . though I'm not sure what you should search under: "loud," maybe? For our DS, it was one of a few signs (combined with an eczema outbreak, distractibility) that he was flaring. I think it's a processing thing and, interestingly, in most cases, is no reflection of the person's hearing capability. DS and most of the other kids I've heard of with this strange symptom hear just fine . . . they just have some sort of false regulation with respect to their own speaking volume.

I thought our DS would have an OCD-related objection (scrupulosity) to it as well, but he didn't. Maybe because he's fairly well tuned-in and knows about recent marijuana legislation in Washington and Colorado. Or maybe because he's well enough now that he trusts his parents and knows we wouldn't give him anything illicit. The Bluebird Botanicals is also, for all practical purposes, THC-free; it is the cannaboid oil that has the anti-anxiety properties. Your comments regarding your psych struck me, because we just had a psych appointment last week and talked a bit about CBD oil with her. She's very curious and reads most of the latest research, which is one reason we picked her. She basically said that she wouldn't rule anything out, and that if a person were struggling and none of the "standard" treatments worked well for them, she'd support someone's use of something like CBD.

We tried the Bluebird Botanicals CBD oil for a short trial. First, DH and I took what Bluebird recommended as a starting "adult" dose . . . I want to say about 11 drops, on the tongue, held in the mouth for several seconds, and then swallowed. I wanted to know what we might be subjecting DS to before actually giving it to him. DH and I definitely felt some "calming" effects; I've never smoked pot, but DH, via some "experimentation" in his college years, recognized the feeling as not too dissimilar from the light buzz he used to get from that. I felt more relaxed (a little less "Type A" ), and a little "fuzzy." The first time DS tried it, in the same dosage, he was home for a long weekend with a relatively light homework load. He initially reported that he felt that it helped his focus and concentration, but his homework progress over that weekend didn't entirely bear that out. He did not report any specific lessening of anxiety or OCD, nor did we bear witness to that in terms of his behavior. He tried it just once more, on a day at home, when he was feeling overwhelmed. Again, it didn't seem to have any tangible effect, and after that, he declined it based on its taste. If the impacts had been definitively more positive for him, I think he would've dealt with the taste issue, but lacking that, he decided the trade-off wasn't worth it. And since we had no evidence that it had been especially good for him, we didn't press the issue. That was our experience, for what it's worth.

It may just be a matter of framing it in a positive way for your DD . . . Maybe the special ed teacher (is this the same one that's serving as her caseworker for the purposes of the IEP?) is being compelled to institute this process so that she can document things for the IEP? Does your DD not have a good relationship with this person? If not, maybe it's time to consider either working to build a better relationship there or changing it up . . . giving DD another teacher to report to? Our DS, particularly during the period that he was not in school all day from start to finish, did check in with the special ed teacher/caseworker every morning. But for him, it was a positive thing, probably mostly because this guy was very special and was dedicated to helping DS stay positive, stay in the building, and stay engaged. If not for the positive influence of that relationship, I don't know what would've happened with DS. I think your vision is a good one . . . give DD a chance to build a relationship with this person. Honestly, from your original post, it sounds as though the school may have a bit of an idealized view of your DD's progress, so this one-on-one check-in may be the best thing for everyone . . . give them a better feel for where your DD is in her attainment of IEP goals and reinforce your concerns that they not push her too hard, too fast. If she really is going to wind up reporting in, to some extent, with "how sucky" her progress is, that "suckiness" is a double-edged sword, of sorts. It may make DD feel inept, having to report it, but it reinforces the fact that she needs more time and more supports, rather than pushing. And if this special ed teacher is a good one, she'll help in rebuilding DD's self-esteem and sense of capability over time. Get those rotors fired up! Sometimes being a helicopter parent is the only way to go! Much in the same way that "the squeaky wheel gets the grease"!

Momslove -- Mostly, I'm posting to tell you that your story is SO VERY familiar, and you are not alone in any of what you're experiencing . . . it's almost a "repeat" of what our family went through with our DS though, for the most part, he went through it all about a year earlier than your DD (through 10th grade), and by his junior year, he was able to pretty much navigate school "normally." I don't know of any literature that really deals with this issue, and certainly not peer-reviewed literature. There are some good books about OCD in the academic setting and what sort of 504 and/or IEP accommodations are best for giving a student with OCD behaviors their best shot at success, but like you, we saw that everything we were dealing with was not limited to OCD . . . it was also the fight-or-flight episodes, the general anxieties, the exhaustion from working so hard to "hold it together," the melt-downs from a combination of exhaustion and fear that "this will never be over . . . I can't do it!" And similar heartbreaking experiences. It sounds like your school, similar to ours, has been great in giving your DD the opportunity to work her way back into being in school for a full day; one of our IEP team members (a gifted education teacher) stated it blankly. The number one goal was to get DS into school, and keep him in school, for the full day. That was all that mattered, and everything else would have to play secondary to that. Thankfully, not only did the rest of the team acknowledge her wisdom, but they wrote that as a goal in the IEP documentation itself. I think that was key. Does your IEP have that as a goal, too? So, that being said, the school, as I'm sure you know, is required to demonstrate "progress" with goals in the IEP; without documenting progress and re-assessing current conditions and setting new goals, an audit would likely determine that the school was utilizing the IEP and associated federal funds in an inappropriate way. I don't know all the legal issues, but this is the essence of what I've been told by our caseworkers over the years. So the key is that the caseworker and other individuals contributing to the IEP be made aware of the most subtle of accomplishments and gains so that they can meet the requirements for their documentation while keeping those things in place that support your DD without pushing her too hard, too fast. You might try making sure they know, for instance, that your DD is still exhausted at the end of the day and that she still is far away from being in that "normal state" they see in other 11th graders . . . having the time and energy to undertake extra-cirriculars, for example, or participating in other "fun" activities, rather than just struggling to keep up with school work and getting adequate rest. Particularly if they haven't asked these sorts of questions about her life outside the school building itself . . . I think sometimes we make assumptions that they must know these things . . . they're professionals for heaven's sake. We've had the benefit of a school psychologist on our team, for example, who stresses these issues . . . that DS deserves and needs a social life, downtime, sufficient sleep, etc., in addition to being adequately challenged in his academics. That ALL of his emotional, mental and physical energy should not be expected to be taxed in academics or the school day alone. My DS is now a senior, and he still has his IEP, and he still has times when he feels overwhelmed, overtaxes, exhausted, etc. He has an IEP resource period that he uses to rest, relax or catch up with work, depending upon how he's feeling. And, even so, we occasionally allow him a "mental health day" here at home because, like your DD, he sometimes has to fight very hard to "feel good," and when he's exhausted and overwhelmed, he tends to catastrophize and say that he "never feels good," either. It's the exhaustion and hopelessness talking, in the face of a laundry list of academic pressures he's worried about in that moment, but I know it nonetheless feels real to him. So, a mental health day it is! As for continued CBT/ERP . . . in our experience, it has been very beneficial. But I can totally relate to your concern that there aren't individuals to whom you can readily turn in your immediate environs. We've been through three therapists in the last five years ourselves; each of them had some skills and benefitted DS and our family in certain ways and for a period of time, but DS's maturation and development eventually rendered each of them obsolete to some extent, and we grew weary of paying hefty sums for therapy that was, at best, marginal. That being said, however, through more than 7 years of therapy off and on, plus some great books by professionals like Dr. Aureen Wagner, we've developed some ERP skills and techniques of our own that we use and coach at home every day, and DS takes to school with him, as well. I'm not clear if your school wants a professional to help THEM/their staff with tools and techniques for helping your DD deal with her OCD in the school environment, or if they think your DD needs professional intervention while in the school building? But again, in our experience, that needs to be secondary to keeping her in school in the first place. We have now moved on to being in the place where we're expecting our DS to "learn to deal with this" more and more, but that's because he's been able to be in school every day, all day (an occasionally mental health day at home, notwithstanding), for nearly 3 years now. And he's planning on going to college next year, where he's going to have to be prepared to self-advocate even more, and find his way through those moments of distress, anxiety and exhaustion on his own, without me or his dad likely to be physically there to help him pick himself up. So, I understand what the nurse is saying and, with another kid, at another place in their health or development, I would agree with her. I just think her timing's off, and she doesn't get that. So maybe if you give them more color, more examples of what your DD's day, as it currently exists, takes out of her. Give them some information that might help them identify her progress, however subtle, while keeping expectations and goals reasonable and not out of range for your DD in her state of health. With respect to OCD in the school environment, meanwhile, I might offer them a copy of Gail Adams' "Students with OCD: A Handbook for School Personnel." Though we had a good, functional IEP in place when we became aware of this book, it was a great tool for further validating the accommodations we'd secured and put them into perspective for the staff and administration, I think. Your DD is brave, and it sounds as though you're doing a great job supporting her and advocating for her. And as good as her school has been thus far, I suspect that you all want similar things for DD with respect to her school day, in the end; it's just a matter of setting a reasonable time-table and "working the system" together so that the school can meet its requirements insofaras the IEP is concerned, and you and your DD can meet her needs. Hang in there! And tell your DD it DOES get better, easier. And she's getting stronger, every day!

From our experience, I would probably 1) decline to increase SSRI, since our kids generally respond best to atypically low doses; and 2) if you decide to taper and cease, taper very, VERY slowly . . . probably at half the pace (or less) likely to be recommended by any doc or psych. We made the mistake in the past of trusting a psych who, to be fair, was following the literature he'd been provided on the subject, but had absolutely no clue what kind of stuff goes on the brain of a person being tapered off an SSRI or transitioned onto another one. And all too often, our kids lack the ability to fully articulate the "zaps" and "pings" that are going on in there during the process, so instead they wind up with all these behaviors, trying to compensate for the "weirdness" they're being subjected to inside.

Hi AWilliams -- Florastor (or sachrymyces boulardii) is a good one because it can stand up to antibiotics and not be killed off, even if you dose concurrently or close together; it's a beneficial yeast which is especially helpful for combatting diarrhea. Otherwise, there are other probiotics available at the typical grocery or pharmacy that can also survive antibiotics, like Culturelle (lactobillus gg). The only thing to avoid, really, are the straight acidolpholus probiotics (the "pearls," etc.) because antibiotics will kill this bacteria strain. We combined sach b. and a multi-flora supplement that we got from the Vitamin Shoppe (the brand is Renew Life) while DS was on antibiotics and had good results that way. There have been some reports of kids who do not respond well to sach b, however, so if you decide to try it, I would make just that one change for a bit and see how your child responds before adding anything else. Good luck!

Glad you have an appointment coming up! Don't know if you're in the Midwest, but you've heard about that upper respiratory virus that's going through the schools, no (enterovirus)? Sounds as though it can be particularly nasty, especially for some kids. Take care, and don't mess around!

We're aiming for a college that's within a 4 to 5-hour drive at most . . . far enough away that he can live his own life, but close enough that, if we need to get to him or he to us, it's not a matter of an extraordinarily expensive, last-minute plane ticket or a 12-hour road trip! Luckily, there are a couple of good picks for his area of interest (computer engineering) within those parameters, so things generally look positive in that regard. Plus, we have a couple of more local ones (within an hour or so) in our back pocket for a fall-back position. What'll I do while he's away?!?! I have NO idea! The three weeks this summer were downright weird, I'll tell you! Of course, I spent the first one stressing about every little bump he encountered, I spent the second one holding my breath that he was settling in and enjoying himself more and more every day, and then I spent the third one planning his return home. So three months or so at a stint . . . that's going to be life-changing, for sure! And by the way . . . I'm creeping up on 80 myself! I think PANDAS years are relatively equivalent to dog years, and we went through a few of those.

I need to brag, and so few people in the "real," non-PANDAS/PANs world will understand . . . so I come to you guys! DS has had quite a road, and he keeps coming into his own, little by little, every year. He's now in his senior year of high school and our big accomplishment this past summer was the three weeks he spent on a college campus, living in a dorm with a roommate, eating at the cafeteria and attending an engineering "camp" designed for rising seniors, with college instructors presiding. That experience wasn't without challenges, but we threw him in the deep end, and he swam! Actually came away from it convinced that, in another year, he will indeed be ready to leave home for the "full-bore" college experience. Still, he started his senior year with some anxiety and return of his nemesis of all OCD behaviors: contamination. No dramatic "flares," really, but just the creep and crawl of that insidious beast. So when his AP Calc teacher called us last night, merely for the purpose of telling us what a joy DS is as a student, how bright he is, how he asks deep, thoughtful, creative questions rare of a math student of his age, how respectful and polite he is in class, how grateful this teacher is to have him to teach . . . I almost cried. DS has enjoyed academic success, yes, particularly once we got him effective PANDAS treatment. But as a 2E kid to begin with, who also has a tendency toward high anxiety, he's rarely appreciated to this extent by his instructors. More often than not, they cut him slack on the one side (keeping up with production requirements, occasionally behavior) because he performs so well on the academic side (particularly testing which, interestingly enough, the anxiety doesn't seem to grab a foothold in). But genuinely appreciate him? Even seem to flat-out like him? That's rare! I guess I'm bragging almost as much on this teacher as I am on DS . . . in my book, they're BOTH keepers! Thanks for listening!

I'm not well-versed in lyme, but I have been a participant on the forum for many years now. I would search the forum for threads with "IVIG" in the title; I think you'll find at least some anecdotal answers there. It's my best recollection that there was at least one well-known PANDAS/PANS treatment provider -- an immunologist, in fact -- who felt that IVIG in cases in which lyme was the primary culprit, was not the best course of treatment. However, this illness and the treatment protocols certainly have evolved over time, and there are probably more contributing factors to the appropriate treatment method than the original "instigator," whether lyme, strep, myco p,, etc.

And Dr. K. is a very big proponent of IVIG as THE appropriate response to PANDAS/PANS. He is speaking from his experience, which undoubtedly has depth; however, this is not reporting on the results of a clinical trial or anything beyond "professional anecdotal" information. Anyone know when the NIMH's abx trial will be concluded and reported upon? I admit I haven't been keeping up; have they closed that trial, or are they still accepting participants?

I don't know if anyone knows for sure, but I'll second Mayzoo; strep can hide out in lots of places, with gut and sinuses being the two I suspect may have been part of the picture for my DS. Both biomes are difficult to get to effectively, and both can harbor biofilms . . . micro-biomes in which strep and other bacteria can hide from treatments and antibodies. In the end, we stayed on treatment-level abx for nearly two years before DS stopped "flaring." I will also say, however, that stress and general anxiety, I think, can contribute to flare behaviors, even if the flare isn't linked directly to a microbe or autoimmune "event." There was a research paper floating around here on the forum a year or so ago about how stress can contribute to a more permeable blood brain barrier (BBB) (presumably via inflammation), and a more permeable BBB, in turn, can let things into the brain (like antibodies) that don't belong there. So a combination of treating with anti-inflammatories and working to minimize the stress should help get through these "flares," as well.

Have you tried the "Find Help" page on the IOCDF web site? http://www.ocfoundation.org/findproviders.aspx If not, I might start there. Just keep dialing and doing phone and/or email interviews until you find the right fit. I here you on the "push" for medication, but if you're really participatory in your own therapy and demonstrate a willingness to invest and work hard, I would think that a "good" therapist will hear you out and give you that chance. And maybe, over time, you truly won't be suffering anymore to the extent that medication continues to be recommended, or, if it is, you'll have built a more trusting professional relationship with a provider and embark upon a new protocol that could be more successful than the ones before. Hang in there, and good luck!

Welcome to the forum, but sorry your family has been forced to deal with PANDAS/PANs. As you do some reading here, you'll find that our stories, including treatment protocols, can vary widely. What does seem to be a thru-line to some extent, however, are commonalities among behaviors that we see in our kids when they're sick. There's some commonality in response to various medications and supplements, too, but not always. Time frames vary dramatically, also; I have my suspicions that this variance has to do with age at diagnosis, length of time the child was suffering due to PANDAS/PANs but went incorrectly diagnosed prior to diagnosis and treatment, and similar temporal differences. My DS was diagnosed with "regular OCD" at age 6 and went through a second "flare" or exacerbation at about 7.5 years. We inquired about PANDAS with ped, therapist, and ultimately a psych as well but were told it wasn't "real," and since our DS was classically asymptomatic for strep, we couldn't demonstrate a link, either. So we treated with therapy and finally an SSRI (Lexapro) until he turned 12. At 12, he completely flipped out. Went from being fully functional, funny, social, academically gifted, to a basket case. Couldn't read, sleep, play, eat. Psych kept switching up psych meds . . . different doses, different formulas. Nothing worked, and he just got worse. "Saving Sammy" and subsequent email conversations with its author, Beth Maloney, turned our attention back to PANDAS/PANS, particularly since Sammy was classically asymptomatic also. Ultimately, we were able to prove some atypical immune response through blood tests, and our ped was, gratefully, willing to give us an abx trial. Based on Sammy's protocol and our DS's similarity to Sammy in terms of age, behavior set, etc., we began with Augmentin XR, 1,000 mg., twice daily. When I found this forum and connected with a number of other families and great minds who were deep into the latest research, helping their own families and others, too, we began to explore other supplements that could assist DS with respect to immune balance and behavior; we also found a PANDAS-literate psych and reduced his SSRI dose and changed the med, as well, to Zoloft. We looked into IVIG but did not pursue it for a number of reasons, not the least of which was DS was so positively responsive to abx, we didn't entirely see the need for another, more expensive intervention. DS was on the XR for nearly 2 years; we slowly weaned him off the last 4 months or so. He also continued on Zoloft and certain supplements we found seemed to help him on an ongoing basis: NAC, B6, zinc, quercitin, omegas and magnesium. We also kept him on probiotics (sach b. and a mixed flora) during the abx and for quite some time afterward. ERP therapy was also his constant companion, twice each week for the first year or so following his PANDAS dx, and then edging off slowly as we saw him gaining more traction over the OCD, and as we became more and more literate as parents in terms of helping him beat back the OCD at home, rather than accommodating it. He's now 17 and I consider him a success story. He can now maintain his health -- mental and physical -- even when exposed to strep. He's been off abx for nearly 3 years, though he continues on a low-dose SSRI. I've found a compounding vitamin supplier and have been able to order a custom blend multivitamin for him that contains the things we know help, and leaves out the components we've seen can have negative impacts for him. He is back to his functional self -- funny, fun, bright, in AP and honors classes in his senior year in high school, has friends, etc. He still contends with some OCD; whether or not that's because he was dealing with that for 6 years before we were successful in getting PANDAS intervention I can't say for sure, but that's what I suspect. His brain was being wired those 6 years, so undoing that will likely continue to take some time. I wish you all the best, and from our experience I will offer two key perspectives: 1) time is an important component in the healing process; and 2) don't ever give up!

We did experience this, but our DS was much younger than you when it happened. And we didn't know at the time that it was PANDAS. He was in second grade, and after school's winter break, he had a precipitous decline in functionality and academic capabilities. He actually appeared to have forgotten how to read, after having been reading at a 5th grade level just before the winter vacation. Unfortunately, I don't have any magic bullets for you. Only an experience that tells us this is one of the potential impacts of the PANDAS onslaught that time . . . and treatment . . . will curb and then give your brain a chance to regain its purchase in this regard. Time, though; it takes time. Are you better, currently, at understanding the spoken word, as opposed to the written word? If so, then for the meantime, I would see if you could perhaps get some of your books on tape? Or maybe the college has a resource for the vision-impaired in which your assignments could be read out loud to you by others, until your brain regains some of its capabilities? We did some reading aloud to our son for a period of time, and for novel reading and the like, we purchased the books on tape versions. Hand in there, and good luck to you!

Do you mean that you're hoping to find some therapy options that would be provided by way of government programs like Medicaid or KidsCare, as opposed to private treatment options that would be covered either by your own resources or perhaps private insurance? I will say that, unfortunately, I think good therapists can be hard to find, and because they tend to be in demand, many of the better ones decline to participate in government-funded programs or even private insurance groups. All of our therapists over the years, we've had to pay out-of-pocket for and then submit for a level of reimbursement (generally pretty low because these providers are "out of network") from our insurance company. The good news is, though, that, at least in our area, a number of local hospitals have more recently opened outpatient "behavioral health" programs that I understand accept both government-sponsored payment and a variety of insurance plans. So if you can find a behavioral health department/program in one of your local medical groups, that might be a good place to start. One final caution I'd share, however, would be that, unless you're one of the truly lucky ones (living near a place like University of Southern Florida, for instance), a behavioral health program such as this is unlikely to be openly accepting of, or knowledgeable about, PANDAS/PANS, so you'll want to keep the big picture in mind. You're getting your PANDAS/PANS health treatment elsewhere, and this therapist or this therapy program, while it would be great if they had some knowledge, is focused upon helping you and your child build some tools and techniques for addressing the behaviors, rather than the underlying health concern. So I would expect and accept the therapists' expertise in that "behavioral" area, even if they're not completely on the same page in terms of the underlying cause. We've found we sometimes have had to compartmentalize in this way in order to cobble together the best available supports for our DS's progress. Good luck!

Wombat -- I very much like your idea of making a list the night before to prepare yourself for the next day's activities/tasks. I suppose that, once you're finished with school, and/or you're not scheduled to arrive for a job at a particular time, a list like that would be pretty essential in driving a person with this form of OCD forward; without a routine or schedule, I'm certain my DS would tend to "linger" indefinitely on some things himself. That's largely why even his summers have been scheduled with camps, classes or "to-do lists," so that he doesn't feel at sea and therefore more inclined to distract or compulsion his way through the day! I'm sorry if I came across as perfunctory or lacking in empathy; believe me, I know that it's not in any way easy to shed OCD behaviors in any form! My DS was diagnosed with OCD at 6 and he's now 17, so we've been dealing with it . . . in varying degrees and forms . . . for 11 years ourselves. And though PANDAS treatment certainly positively impacted the most severe behavior sets and made him functional again when he experienced his most dramatic "wax" at the age of 12, he's not "rid" of OCD, either. What I intended to suggest to you, really, is a way of either containing/controlling that OCD avoidance behavior, or channeling it into something that's more productive and beneficial for you and the other people in your life. I know it won't be easy, and it very well may be that if you're successful in beating it back in this particular area, it may pop up in another form, somewhere else in your life, to pester you. I've often heard OCD described as one giant game of Whack-a-Mole! But since you brought it up in a topic post, I assumed this particular manifestation is really interfering with your life. I hear you on ignoring the timers and getting hung up at your computer, etc. We've seen that in our house, too. I guess I see my job as a mom, in the time I have left before my DS hopefully goes off to college and then to his adult life, is to indoctrinate him as much as possible with the "non-OCD perspective," aka, what would the non-OCD person do in this situation? So, if he ignors his timer, repeatedly, I step in and give him the non-OCD perspective in order to break his reverie or help him corral his mind back on the task at hand. Or if can see him avoiding something in particular, call him on it and let him know how a non-OCD person would likely break that imposing task into smaller pieces to prevent it from becoming too overwhelming, etc. I know I have limited time to impact him, and I'm not certain that, without our support at home, he'll be as successful in breaking out of OCD habits entirely on his own. But he went away for three weeks this summer and managed, in an unfamiliar environment with unfamiliar people, so my hopes are high. Since you're living with your mum, do you have her or someone else at home who can support you as you work at some of this stuff? That would be tremendously helpful, I'm sure! I see in your signature that you're exploring PANDAS/PANs and trying some interventions, so those may help you. And if the effects seem to be transitory and not lasting, don't lose the faith; sometimes we would think one of our DS's interventions had lost its effectiveness, too, but by sticking with it nonetheless and continuing to journal about his progress, we were able to see that he was still gaining ground on his health (mental and physical), even though the gains became more subtle over time. Do you keep a journal or a diary? Maybe on your computer? If not, it's another idea I might suggest; it could help you keep track of how you're responding to various interventions, and over the long term, you might be able to see patterns and/or benefits that are harder to view objectively when you're in the midst of everything. That's what we found, anyway . . . that when we thought our son had plateaued and wasn't continuing to heal, we could go back through the journal for a couple of months and recall the odd or severe OCD things he used to do that he'd stopped doing, or the more "normal," everyday behaviors he'd given up during his illness but since reclaimed. Sorry this is such a battle! Try to hang in there and celebrate every achievement, however subtle. All the best to you!

Wow. Thanks for the link and the story. I will never again blithely consent to vaccines for my DS or myself. I made that decision several years ago, but it becomes further enforced and validated by stories such as this. I continue to be appalled at the medical community that turns its collective back on this sort of experiential evidence, "clinical trials" be damned. It's absolutely maddening.

An update on these customized vitamins . . . DS has been taking them since May and so far, so good! What's more . . . happily . . . having the supplements combined and divided (sounds silly, I know, but hang with me here) into what they describe as 9 daily capsules has given us the opportunity to try titrating these supports down in a slow, measured way, over time. So now he's down to taking 7 capsules twice daily, rather than the 9 he began with, and he's holding his own and demonstrating no ill effects or behavioral regressions. We're encouraged and thinking we'll try taking it down to 6 capsules in the next few weeks and see how that goes. Would love DS to be able to take fewer capsules on a regular basis, and it would help stretch the supplies and budget, too! Thus far, we're pretty impressed with this vendor, FWIW.

Our DS's treatment during the depth of PANDAS was Augmentin XR (1,000 mg., 2x daily) and Zoloft (SSRI) - 25 mg, once a day. We also did NAC (1800 mg./day) and some other supplements (zinc, B6, quercitin, fish oil, D3). Have you done 23andMe or any of the other genetic testing, and/or did you see any differences in behavior upon starting the NAC? Some kids do not respond well to NAC. I don't know enough about the genetics or common mutations that might account for that, but you can do a search here on the forum for NAC and find several threads attesting to the different responses. We also found that a standard multivitamin did not serve our DS well because it contained some things that he didn't tolerate especially well, while other things that were beneficial, if they were contained in the vitamin, were not in sufficient dosages for him. For instance, he does not do well with B12 (which nearly every multivitamin seems to contain in abundance!), but he needs plenty of B6. So we were pretty much forced down the path of doing individual supplements. Until recently. Now we "custom blend" his multivitamin through Vitaganics so that it contains what we found works for him and eliminates what doesn't. In our experience, if you can do it, the best way might be to eliminate and/or introduce one thing at a time, so that you can isolate his response and have a better idea of what might be a "culprit," and what might be supportive. Sorry he's going through this . . . we were there at about the same age, and it is horrendous. Try to hang in there!

Not specifically, but frankly any atypical "stress" on the body or mind seems to inspire more OCD thoughts or behaviors in someone who is predisposed. My DS needs well-regulated meals (so that would go to low blood sugar) and sleep for optimum mental health. I realize that's no "light bulb moment" but is, rather, pretty common sense. But I think some people are just more likely to be impacted by dysregulation in the things that most people accept as good common practices. I would think thyroid issues would be similar, though I have no experience with that. Our psych, meanwhile, has noted that impacts to the immune system are well-documented with respect to corresponding impacts on the prevalence/pervasiveness of OCD (another sort of "duh" moment for those of us dealing with PANDAS/PANs), but she's been very insistent that it is the case with non-PANDAS/PANS sufferers of OCD as well as those identified with PANDAS/PANs. That perspective has sort of, converse to what she intended I think, fed my suspicion that most/all OCD is immune-related at its root.

I would also wonder about the Prozac. He started it in July? Did you start right at the 10 mg., or at a lower dose and increase? You've probably read here about how PANDAS/PANs folks can be more sensitive to SSRIs, and, in some cases, do not tolerate them well at all. And because SSRIs generally take 4 to 6 weeks to reach full efficacy, I would wonder if maybe the Prozac isn't perhaps at too high a dose for him? Or if, perhaps, isn't the right med for him at all. My DS takes an SSRI (Zoloft), so I'm not anti-SSRI. But we've experienced ourselves the negative impacts of a dose higher than he could tolerate, so my primary suspicion would lie there.

Don't want to speak for Quannie, but yes, it sounds like OCD to me, as well. Time management can be an issue for many of us, of course, but in the way that OCD can act like a "grand allergy," exaggerating just about anything it chooses to focus its lense upon, I have seen it play a very big role in my DS's time management struggles over the years. When he was younger, and particularly when the OCD was ramped up, he could be completely oblivious to the passage of time; it was as though he truly expected that the clock would stop for him, and then start to tick away minutes again when he was "ready." He'd get highly indignant when he'd snap back into full consciousness only to realize that, yes, it was bedtime already. No, he couldn't stay up later because he'd lost track of the time, or because he'd spent a 1/2-hour in the bathtub instead of a more reasonable 15 minutes. And his loss of time tracking wasn't because he'd been engaging in any particular rituals, either. For my DS, that OCD was (and can still be at times) about avoidance. He'd let the time tick away, he'd "hide" in a task or activity that felt safer to him, in order to avoid that which (usually a transition . . . leaving the house, starting homework, etc.) inherently contained more triggers for his anxiety. Procrastination at its finest, really . . . an art form. So, maybe you drag your feet about moving on to the next thing . . . breakfast, bed, dinner . . . because the transition itself is less comfortable for you than continuing to engage in whatever activity it is you're currently doing? Ironic, I know, that in dragging your feet, you're actually causing yourself more anxiety in the end because, as you've said, you're not completely unaware that your actions (or inactions) can inconvenience and otherwise negatively impact others. But I think that's partially in the nature of OCD, as well. Ever had a scab after scraping your skin, and then you feel compelled to keep picking at it, just to see if it still hurts? Sorry to be a little gross, but my DS will admit to that compulsion, and similar ones, frequently. So by procrastinating, it's like picking at a scab . . . you know its likely to continue to "hurt" you, to cause you more anxiety, but you do it anyway, just to see if it still invokes anxiety. OCD can be a really sadistic booger! During the school year, DS will rise probably an extra hour earlier than most of his classmates so that he has more leisure time and can take his time before he has to leave for school. Never mind that he's been told many, many times that if he'd just speed up a bit, stay focused, he could sleep in another 1/2-hour or hour and still get to school on time. And even so, there are days in which the avoidance of that transition will still trip him up, and despite having risen early and stayed on pace right up to the last 20 minutes or so, he will drag his feet in the last few tasks before walking out the door (choosing clothes, brushing his hair, etc.) to the point at which he and everyone else in the house is on edge because he's about to be late for the first bell. Completely avoidable, but the transition itself was more anxiety-producing than the reality of being late, I guess, so he made that choice a few times last year. I would suggest the following. 1) Take a look at the events/tasks for which you are habitually late and ask yourself, what am I avoiding? Then set about some ERP, "exposing" yourself to those things you've been avoiding repeatedly until the urge to avoid them lessens or dissipates completely. 2) Set yourself a timer, on your smart phone or with a conventional kitchen timer, and obey it. It's objective, it's mechanical. It isn't prompting you because it has a dog in the fight; it's just there to tell you that the passing of time is fact, not malleable fiction, and that you've got to move on. 3) Practice "moving on" in general . . . letting things go, moving from one task to another, or one event to another, without hemming, hawing or dragging things out. 4) Reward yourself for being timely, and for avoiding the compulsion to avoid! Use that "found" time to do something of value to yourself and/or to others.

Is your DD getting any therapy for the OCD? CBT or ERP? Yes, OCD can be very sticky, especially in our kids, I think, because we're working so hard to address the variety of comorbid behaviors and health issues, so sometimes we wind up accommodating their obsessions and compulsions in the interest of maintaining some level of calm and sanity! I would try to find a therapist familiar with exposure response prevention (ERP) therapy in your area; this kind of support can make a world of difference in your child's ability to shed the OCD behaviors.