MomWithOCDSon

I know my DS was constantly exposed to strep in grade school, and second grade was especially bad for him, for some reason. I can only tell you that, even though we too have tried pretty much every psych med on the market (including Intuniv and Risperdal), my DS's behavior did not begin to improve substantively until abx, and even with that, we had to keep him on the abx for an extended period. I honestly don't know what the long-term abx are doing. Are they getting at "hidden" or "intracellular" strep? Or at strep protected by a biofilm? Are they helping calm and mediate the immune system overally so that it ceases the excessive antibody production? Are they modulating glutamate and calming inflammation? Are they somehow making it possible for DS's blood brain barrier to close again, thereby preventing a continuing onslaught of antibodies? Beats me. But what I do know is that Intuniv didn't "fix" his trouble with focus, and Risperadal just made him sonambulent; but with a steady use of abx, his focus, his mood, his behavior all have improved dramatically. I can't remember your full history, but can you go back and try abx again? Different abx? Higher dose?

I will join in all these others, especially the other Nancy (fcefxer) in saying, "No. It's not too late." We all need a break (or a breakdown) now and then; this is a long, hard slog up a very steep hill. But after you take a little time to regroup, circle back around and dig into fresh options and opinions. There's still work to do, and your child is counting on you. YOU CAN DO IT!!!! This is an old story from me and I run the risk of becoming a broken record, so for the sake of all the other forum folks who've heard me say it more than a dozen times, I'll spare you all the long version of my DS's story . . . again! Just suffice it to say, we went 6 years operating off a diagnosis of "regular OCD" before even finding and acting upon PANDAS. So my DS had more than 4 years of an SSRI and 6 years of CBT/ERP therapy, compulsions and obsessions, rituals, germaphobia, etc. behind him by the time we started treating the underlying infectious trigger (which in his case is documented as strep). We've been at it for more than 2 years and things aren't perfect . . . yet. But they are night and day away from where he was at his worst 2 years ago, and he continues to make small but measurable gains, almost on a daily basis. Most importantly, though, today he's HAPPY again, and so DH and I are happy again. And relieved, and grateful, and cautiously optimistic, and knocking on wood with nearly every breath. For most of us . . . maybe especially those of us who arrived to the PANDAS party late, this is not an overnight "cure" or even improvement. This is a journey and maybe even a life-long management process; that remains to be seen. But the quality of your child's life and your own can be improved dramatically within a relatively short time with the proper interventions, dogged determination and persistence. Don't sell yourself or your daughter short! You guys can get ahead of this thing! Take a deep breath, lean on your family, friends and Forum Friends, and dig in! We're here for you!

Personally, I think the USF/Dr. Storch program is as good as it gets, especially for children. A number of other medical centers and practictioners offer good programs, too, but they're more often geared toward adults or adolescents. You can check the International Obsessive Compulsive Foundation (IOCDF) web site for information on other programs and providers. IOCDF - Intensive Programs Another option to consider is to continue your local search for a good ERP practitioner and then engage in "intensive" therapy locally. For example, when our DS was at his worst and not really capable of attending a full day of school or even focusing on schoolwork for a full day at home, we arranged with a good, local therapist to do three, 1-hour sessions per week (every other day), with a full load of "homework" for the days in between. It takes a lot of participation on the parents' part when done that way, but the better programs like USF also require parental participation, so it's probably not all that different. The key again, though, is to find a good therapist with good techniques who's also capable of developing an excellent rapport with your child. Again, the IOCDF may be able to offer you some other options on that local basis (we've found two good therapists via these listings). IOCDF - Find a Therapist Good luck to you!

Lots of questions? S'okay! No problem . . . I'm a "talker!" No, my DS did not go on abx at his second major exacerbation at age 7. My DS is "hyper-immune;" he rarely gets classically ill, and he has significant environmental (dust, mold, pollen, cat dander) allergies, which is also a hyper-immune response. In hindsight, we are hypothesizing that his auto-immune response to strep began back when he was a toddler and suffering from constant, recurrent ear infections. From the time I stopped nursing him at about 14 months until we finally submitted to having "tubes" put in his eardrums to facilitate drainage, he had one ear infection after another. And, of course, they were all met with 10-day courses of antibiotics which probably only served to strengthen the bacteria that lurked about. But once we got the tubes, beyond allergies, he's always been exceedingly physically healthy. In fact, we'd get a note home from his grade school saying that a case of strep had been identified in his class and we should keep an eye on him, but he'd never come down with it; instead, he'd "carry it" passively and pass it on to his dad or me, and we'd come down with a classic, raging sore throat case. It took us about 6 months to bring him out of the "extreme episode" he had at age 7 . . . lots of therapy, TLC and a low-dose SSRI (at the time, lexapro). Then, honestly, he was FINE until the episode in May 2009, at the age of 12! Again, he still had these "quirks" and "eccentricities" that we attributed to the OCD, but the remission was so complete and beautiful that you would not have known him from any other kid his age. The separation anxiety, compulsions, rituals, distraction, emotional lability all disappeared, even without abx. I'm guessing that, at that point, his immune "load" was still somewhat manageable for him, so he recouped and recovered sufficiently in that 6 months. But the crisis at age 12 beat everything we'd ever seen before, and then some. And yes, once we found PANDAS, he did go on abx continuously, with the exception of a couple of short periods where we tried to remove them; but he would regress again (always within 8 to 10 days of having ceased or even significantly reduced the dosage), so we'd put him back on. So, for the most part, he's been on abx for about 2 years now and has steadily improved overall during that time. We have recently been in the process of reducing once again and, thus far (knock on wood), he seems to be holding his own this time without any noticable, consistent regression. Only time will tell, though. We had a consultation with Dr. K. and have considered IVIG, but we've decided it is not for us, at least at this juncture. Since DS is hyper-immune and has no measurable deficiencies, we would not be likely to be able to get insurance to cover it; furthermore, since many families find themselves doing more than one IVIG over a period of time, and I've recently read in a few posts that doctors are now advising that it can take as much as a year following IVIG for the full positive impacts to become manifest, I'm not convinced that IVIG would have any more efficacy, or work with any greater speed, in our case than the abx appear to. The abx have been very beneficial for our DS, and we have not had any negative side effects (yeast, gastro distress, etc.), especially since we've honed in on the best probiotic balance for him. And also "out there," figuring into our decision-making, is that pentultimate example of Sammy Maloney who, in far more distress than our DS has ever been, undertook several years of antibiotics, no IVIG, no pex, and appears to have weathered the storm with flying colors. The other coincidences between Sammy and our DS (12 years of age at major decline, classically asymptomatic for strep, math prodigies outside of exacerbation) have loomed large as we go down this path. So, if DS were to stop responding to abx or suffer another severe decline despite them, would we consider IVIG? Of course. NOTHING is off the table. But if DS can continue to gain ground and then hold his own, with abx and hopefully, eventually (like Sammy), without them, then that's the road we plan to take. I will say, though, that I'm looking forward to some results from NIMH's current IVIG trial since I know many families have been helped greatly by that method. The array of PANDAS/PITANDS cases is so broad in terms of age at onset, speed of onset, pace of decline, immunity status, triggers, etc., I HAVE to believe that there is something other than randomness behind those that respond to abx versus those that respond to IVIG versus those that respond to pex, etc. I'm waiting with baited breath for our great dox and researchers to figure that out!

Oh Smarty! Ugh! This is bringing up SO many memories, your and MomCap's stories. In our case, DS was older. But in the beginning of 7th grade, we couldn't go a day without getting a phone call from the school telling us that we needed to pick him up because he was too anxious to stay in class. For the first six weeks of that school year, he spent most of his day in the dean's office, in his future caseworker's room or with his gifted teacher because these were all people he trusted and who would just let him "be" for a while when he was overwrought. But eventually the Director of Special Education Services actually called me and told me that she thought we needed to keep him home (HUGE error on her part, and one for which she paid heavily with the district, since that's pretty much against the law). Anyway, I hear you. Keeping him home is "easier" in some respects, but in the end it doesn't give him access to either the educational or social experiences he needs, and it only contributes to his school "phobia." I feel myself waffling on all this, frankly, because for all the great ERP suggestions and "tough love" advocated by the folks at USF, and very well proferred here by DCMom and LLM, you're stuck. I get it. If DS physically will not comply, what do you do? Especially if you don't have a "you" on the school end of things to help you get that job done! I can tell you that, during the depths of my DS's illness and school phobia, we could've taken away every privilege, every "perk," every little "joy" in his life in an attempt to incentivize him to comply, or we could have promised him the moon, and it would've done absolutely no good. He was just too overwrought, too regressed. Does a one-year-old truly understand that actions have consequences? Well, I would contend that neither does a 7-to-12 year old in the depths of OCD/anxiety. It is all "flight or fight," raw, instinctive, painful response. So . . . all that leads me where? Well, for one, I would agree that you need a really good . . . and probably tough . . . psych/ERP therapist in your corner. When our DS was at his worst, we did pull him out of school for a time. And while we fought the underlying infection, we homeschooled with all the materials and assignments that the school would gather, prioritize and hand off to us. And when he wasn't working on school assignments, we had him in semi-intensive ERP three times per week with the therapist and daily ERP homework. Meanwhile, we got his IEP completed and we got a great person within the school building itself ready to help us get him back in school. It may be harder to do with a 504 Plan because that arrangement doesn't automatically grant your child a caseworker on site; but since you're still in grade school, perhaps there are adequate resources at the school to give you this option, at least for a short period of time? I communicated with the caseworker several times each week while DS was at home and in his intensive therapy, and eventually we even managed to get him to come to the house once each week for DS's district-provided "home-schooling." So DS had an opportunity to build a relationship with this particular teacher and learn to trust him. Then, after about 6 weeks of homeschooling and therapy, we all collectively decided he was ready to go back. We started with one class per day . . . his easiest class that he enjoyed the most, and it just happened to be in the middle of the day. After him handling himself fairly well for a couple of weeks there, we tacked on the next class in the afternoon and so on and so on, until he was in school for the second half of the day. After several weeks of half-day school in which he managed himself in class and built up his confidence that he could do this, we started going for full days. He would still, occasionally, duck out of a stressful class and go to his caseworker for a while. He got better at knowing his own limits and needs, and the caseworker, with our feedback and constructive criticism, learned to support DS without caving in to the OCD. All told, I think it took about 3 months, but DS got back in school full time. So, all that comes around to, no matter WHAT . . . intensive ERP, setting limits and expectations, etc. . . . I DO think you need someone to help you on the "inside." How you go about arranging that, especially without an IEP, I'm not sure. But I think that is the best way to help your DS achieve his self-management in the school without you there. And, frankly, we know our kids behave differently around us than they do away from us, so I truly believe you're going to need to "turn him over" at some point in order for him to really learn to function in the school environment. But you need that ally!

MMWG -- I agree completely about the "fight or flight" reaction and how it can read as defiance! Good point! Smarty -- Would it be possible, if in the event your DS has this sort of reaction to a proposed task, that he be provided a "safe place," somewhere that he could go, away from the stimuli of the general classroom and the pressures of the teacher and other kids there, so he could calm down and sort out 1) what he's afraid of and 2) what other behavioral choices he might have at his disposal, rather than acting out? Maybe the school psychologist or social worker could offer him a "safe haven" in these instances?

Hi Maggie -- Glad you found the forum, but sorry to hear your son and your family are being forced to deal with this. Who you turn to at this point is determined largely by where you are and which medical centers are available to you. Most standard doctors . . . even the specialists such as neurologists and immunologists . . . don't really "get" this PANDAS thing. Too many of them outright scoff at it. It can lead, unfortunately, to a waste of time and money, in addition to prolonging your child getting the help he needs. In my area, in fact, the leading children's medical center flat-out refuses to acknowledge PANDAS as a viable diagnosis or condition. Incredibly frustrating! So, I would take a look at the pinned threads here on the forum regarding "Doctors we've seen who've helped with PANDAS" and see if anybody on the list is in your vicinity. You might also take a look through the members here and PM some in your area to see if they can help you with a referral. Also, if you have a good relationship with your pediatrician, you might try approaching him/her with the information specific to your son and his symptoms of which they may not yet be aware, accompanied by some of the research papers and articles available here, on the IOCDF web site, PANDASNetwork.org, etc. Sometimes, a doctor who knows you and your son well, and recognizes that you're not an hysterical, unreasonable parent and his recent behaviors are not "typical" of him, will be willing to step out of the box a little and help you, at least for now while you seek out a "specialist." Our pediatrician did just that for quite some time while we got our ducks in a row. All the best to you! Good luck!

Smarty -- I'm leaning toward DCMom and LLM on this one, in general. My DS presents with plenty of avoidance, also, so I know that particular animal well. But we were coached very early on, by our son's first therapist, that "refusal" was not an option; that if we lowered the bar to meet OCD's demands, the OCD would just continue to call for the bar to be lowered yet again, and again, and again until our DS was living OCD's life rather than his own. Our problem in the schools has almost always been less in terms of explaining DS's behavior and more in terms of training the school personnel not to give into him when he tries to employ avoidance or refusal; they see his genuine distress, and so they tend to try to do things to "calm the waters," thereby aiding and abetting his avoidance, rather than supporting him while at the same time insisting that he move forward and accomplish the task, even when it means staring down a fear. I'm also betting that, once you're entirely out of the picture and it's just your DS and the school personnel on a daily basis, he'll engage a lot less in refusal and defiance in the classroom itself; he might practice some masterful avoidance, dragging tasks out to the point where he runs out of time, for instance, but I think that with just the teacher and his classmates to answer to, his outright defiance will be reserved for you and your family, in the home environment. So I'm not sure you're going to be called upon, really, to explain refusal and/or defiance in the classroom. But maybe you're concerned about explaining it when it comes to how your DS responds to homework or other outside-of-the-classroom tasks? That's a different issue and, in my opinion, a delicate balance. I'm fully on board with the ERP principals of facing the fears, not "feeding" the OCD, holding tight to certain immovable, non-negotiables, but I also know from experience that there can be, at times, a fine line between holding your child accountable for "bossing back the OCD," and pushing them too far, too fast, to the point where the stress feeds upon the stress and you thereby reach a point of diminishing returns. That's where accommodations like allowing your child to dictate some answers to homework questions, rather than insisting he write them down himself, come in handy. So, long way of saying, explaining refusal and defiance to the school? I think that probably isn't really the issue. Like DCMom, I think you can sit your DS down and let him know that there are certain age-appropriate expectations that have to be met while, at the same time, encouraging him that he'll get support, kindness and understanding both at home and at school. But support isn't the same as avoidance or excuses, and he won't be asked to do anything he genuinely cannot do; rather, if you hit anything along those lines, you as his parent and advocate will work with him and the school to come up with the appropriate accommodation. There's a new book out called "Reality is Broken," written by a think-tank gaming specialist. Her basic premise is that "reality is broken" because our academic and workplace experiences aren't properly modeled, and that's why so many people are drawn to escapism, like video games. And that the best, most successful video games emulate life principals, that if they were mirrored in schools and places of business, would make us all much better satisfied, fulfilled and productive. One key principal she talks about is "flow;" "flow" is when a gamer is kept just at the very edge of his capability, but neither challenged too much so that he becomes discouraged and disheartened and therefore decides to give up on the game, nor bored because things are too predictable or too easy. When you're adequately challenged, called upon to use all your best skills to move forward, but not so constantly and demoralizingly embattled to the point where you collapse and want to give up, that's when you're at your best. My DS and I talk about "flow" a lot, and I feel as though my job as a parent is to help him maintain that level of function. And with PANDAS, that means my role and level of participation can vary widely, and his needs can vary broadly, also, depending on how healthy he is. So it's tricky, making sure that I'm supporting his "flow" but not expecting too much of him to the point where he's demoralized by his inability to push past some anxiety about something, while also not making it too easy for him to where he retreats and steps off an age-appropriate path because I've removed the challenge on his behalf entirely. I like DCMom's idea of having an honest discussion with your DS; you could use that as an opportunity to engage in a "contract" with him about the non-negotiables (such as refusal and defiance), and what kind of support responses he can rely upon from you and the school as he stays in his "flow" and works toward being the boss of his life, rather than allowing the anxiety/OCD to call the shots.

Hi MMWG -- I would start slow with probiotics and see how your son responds. For our DS, there has been an "ideal balance" in terms of types and doses, but it took us a while to figure that out. If your son is prone to constipation, I would stay away from sachrys boulardiis which is especially good for curbing diarrhea. Other than that, most strains or blends are probably a good start; just know that it will probably take a while to sufficiently populate the gut with this new flora and see results. We like lactobillus (Culturelle) and a probiotic from Renew Life that we get at the Vitamin Shoppe. Because of the high count in this particular one, we don't have to give multiple pills throughout the day. Renew Life - 50B There are a number of options with lower unit counts, as well, to start more gradually; Culturelle is a good one because it is 10 billion units in a single capsule and it comes in a kid's formula, also, that can be mixed in applesauce, juice, etc. Kefir and yogurt contain primarily acidolpholus, which is fine if your child isn't currently taking antibiotics; but acidolpholus is readily killed off by antibiotics, so it's not a great choice during times when you're dosing, even if you try and spread those dosages apart. Meanwhile, bifodus and lactobillus, along with sach boulardiis, are more resistant to abx, so there's a better survival rate for those, even when given simultaneously with abx. Hope that helps a little. Good luck!

Thanks!

Striking a chord is okay! You gave me an opportunity for some catharsis! Yes, mine too. Maybe that's why your post struck such an instant chord for me . . . . because I've been where you are! I've doubted, too. So much so that we waffled on treatment for a while -- using antibiotics, thinking they'd done all they could do, then seeing a decline and going back on the abx, hitting another plateau and repeating the cycle again. But as time goes on and we've now stuck with our treatment protocol for an extended period, plus the science continues to evolve and there's more and more information out there, almost daily, I'm just getting increasingly impatient with the "standard wisdom" that gets thrown out there about OCD. And I know that's what you've been inundated with, too, just as we have been because I've said the same things in the past, echoing the professionals and caregivers in the field. I'm a little fiesty ( ), but I didn't take it in the "wrong way." I just recognized a fellow traveler on this road, and I didn't want you to give up, to surrender to the "classical answers" about your son's condition that, however well intentioned, don't, in our experience, tell the whole story. My DS does well on a low-dose SSRI, also, and, unlike many families here who's children's underlying PANDAS/PITANDS infections were caught early and quickly, I'll be thrilled if my DS can completely shake his OCD and anxiety, but I'm not convinced that it can ever happen for him 100%. But he's fulfilling my dreams for his Best Life now by being happy and productive and sufficiently solid emotionally and mentally to fit in reasonably well with other boys his age and therefore have a decent social life. And continuing to have low-level anxiety and/or OCD, in my opinion, doesn't mean that the root of that isn't still auto-immune or inflammatory; it just means that it's become so systemic or "innate" that, either physically or behaviorally, the person is now "programmed" to respond in that way. But that doesn't mean he/she can't be helped, especially during times of illness, by medical (rather than merely psychiatric or psychological) interventions. Thanks for letting me get that off my chest!

Thats what the NIH did. Post-ivig, they kids are put on one of 3 or 4 different types of antibiodics. Our kid was put on amox. Am I missing something here? Isn't that too many variables to successfully test for at one time? If the IVIG study kids are put on one of several different abx post-treatment, how is anyone going to know what is TRULY successful or lacking therein? Seems to me it should be two different trials -- one for IVIG and one for the antibiotic strain -- rather than combining the two. Now I'm concerned about how the results are going to be displayed and interpreted.

Another big "DITTO!" here for not taking "no" for an answer! Also might suggest that many families in areas in which PANDAS-accepting doctors are not readily available have found assistance through DAN! (Defeat Autism Now!) doctors in their area. So that could be another avenue if P.Mom's or the other suggestions don't work out. As unethical as it may sound on one level, I also like the ingenuous suggestion of heading to a "doc-in-the-box" and claiming an earache or something along those lines. It might at least score a short-term prescription that could tide you over and get things under better control until you have access to a longer-term solution. But from the way you describe your son's behaviors, I'm thinking he may not play along with a "pretend" ailment? Mine wouldn't . . . either then or now, due to some hanger-on "scrupulosity" OCD. You might have to claim the health concern is actually yours, rather than your son's.

Just to play devil's advocate here . . . what if the standard "wisdom" regarding OCD and anxiety is more accurately described as "mythology"? What if OCD and anxiety are increased because of the inflammation frequently accompanying illness? Or the excess glutamate that either accompanies the inflammation or is at the root of it? What if the "wax and wane" commonly described of OCD is actually the brain's and body's response to exposure to microbes or other agents (allergens) that contribute to inflammation, exacerbating the symptomology? My son's currently reading some Greek mythology in his English class, and so of late, when I read or hear one of these sorts of "platitudes" about OCD or anxiety, I can't help but be reminded of how the Greeks invented Zeus to explain the natural pheonomenon of thunderstorms, and Posiedon for storms at sea, and Persephone's descent into the Underworld to explain the changing of the seasons. "OCD increases with illness." "OCD waxes and wanes of its own accord." So much easier to just say, "Stuff happens!" and "There's a pill for that!" than to spend the resources to dig down to the "why." Now we think the Greeks were, on their best day, imaginative and, on their worst, incredibly ignorant. I am certain that within 50 years, the civilized world is going to feel the same way about the manner in which our generation is dealing with "mental illness." My son was diagnosed with OCD and anxiety at 6. I asked about the possibility of PANDAS then and was completely waved off . . . it was "controversial," possibly entirely non-existent, the OCD would still require standard OCD responses (therapy and possibly SSRIs), and DS had not had strep (that we had discerned, anyway). At 7 his OCD fairly suddenly (within a period of about 2 weeks) went off the charts, and I asked about PANDAS again and even connived a strep swab out of our pediatrician; the culture came back negative, neither the ped nor the therapist would even entertain PANDAS, and with a negative culture, I figured I was out of options at the time. So we allowed DS to be put on an SSRI. And then at 12, he fell off the edge of the planet again with OCD and anxiety; he became homebound, depressed, completely nonfunctional, despite ongoing therapy and SSRIs, plus the added "heavy-hitter" psych meds he needed just to get a few hours of sleep or take the necessary steps to leave the house to make another doctor's appointment. And then I stumbled across "Saving Sammy," heckled a hospital psychiatrist until she agreed to order the ASO and AntiDnase B blood tests, and took the results along with a copy of the book (his titers were 5 times the high end of the lab's normal range at the time) to our ped and begged for antibiotics. Within 3 days of starting Augmentin, for the first time in nearly 6 months, my son came down and ate dinner at the dinner table. Within a week he would take a shower by himself again. Within 6 weeks, he was working his way back into school one class at a time. The antibiotics accomplished what none of the other "standard OCD/anxiety" interventions did. He still suffers from a low level of anxiety and OCD today, but he's a freshman in high school, attending school daily, taking all honors and AP courses, laughing, learning, sleeping, eating and enjoying his life overall. Now some fairly basic web research will turn up antibiotics (d-cycloserine) being used in conjunction with CBT for combatting OCD. Ibuprofen has been found to alleviate the severity of some OCD symptoms. And antibiotics are being studied for their positive impacts on autism and Alzheimers. And glutamate-modulating substances (in which class beta-lactam antibiotics such as Augmentin are also thought to belong) are being tested for their efficacy in everything from schizophrenia to bipolar to Alzheimer's to MS to OCD. My family lived with "regular OCD" for 6 years before discovering PANDAS and finally getting the kind of help my son really needed. So now, personally, I don't believe there's any such thing as "regular OCD" anymore. The term "OCD," like "autism," is merely a description of a set of behaviors; it's not a true diagnosis with medically or scientifically determined origins. It's a convenient label that signals the end of the line for the medical doctor and a quick referral to a therapist or psychiatrist for your child, but that doesn't make it right or, at this point in time with all the emerging evidence and research, even ethical. It probably does take a combination of genetics (after all, much of immunity is genetic), environment and trigger to result in any of these "conditions," but that doesn't mean it's some unknowable, medically untreatable phenomenon. I'd love to see a trial in which a full contingent of "regular OCD" children and adults are given antibiotics and/or anti-inflammatory therapy and track the results. I'd lay odds that everyone, irrespective of how long they've suffered prior or what, if any, pattern of illness is present, would enjoy some benefits. Sorry . . . I'm on a soapbox today for some reason. I guess your rather innocent statement hit a nerve.

We aren't using either celexa or tenex, in particular, but we do give probiotics with Zoloft (another SSRI). And our DS was taking Intuniv (tenex) for a period, and we dosed probiotics concurrent with that, also, to no ill effects. I think the only issue behind dosing most probiotics and antibiotics concurrently is that the antibiotics can kill the probiotic organisms before they have an opportunity to do their job in the gut.

Well, to be more specific, the only real issue I know of is with time-released medications/supplements and a particular enzyme called cellulase. If you can find a cellulase-free enzyme supplement, then I would think it's worth a try. What kind of stomach pain is your son having? Gas? I'll just note that, for a while, we were trying to do a "high-dose" probiotic regimen, giving our DS lots and LOTS of units on a daily basis. Ultimately, we found that they created a lot of gas for him and he's been much more comfortable/balanced on a relatively "moderate" probiotic level; he's currently taking about 115 billion units daily. Also, you might try bentonite clay. You can get it in a liquid solution that can be mixed with juice, or a capsule form. It seems to help sweep out the detritus in the gut that can be a by-product of both antibiotics and probiotic use, and I know that using it for a couple of nights every few weeks seems to help our DS when he starts complaining about any stomach concerns.

Yes, though my very rudimentary, non-scientific understanding of it is that it is via a different mechanism. It doesn't directly impact sodium channels or those "gaps" referred to previously; it is thought, rather, to actually work on glutamate receptors and/or by increasing the amount of glutathione in the brain. And since glutathione is a "neural protectant" and antioxidant that can prohibit the rate of neuronal death, NAC, whatever the ultimate mechanism, is a good thing to consider adding.

Wow! Good find! This may be another "chicken or the egg" thing, but the statements in that paper regarding "neuronal death" reminded me of much of what I've read about glutamate in the brain, which also can lead to neuronal death when not properly modulated. So . . . . if astrocytes are becoming "infected," potentially not just by HIV but strep, lyme, myco p, that THAT might be what's leading to not just neuronal death but also excess brain glutamate? I mean, unmodulated glutamate is being linked with all sorts of "abnormal" psychological responses and behaviors, so it seems like a distinct possibility. When I search "astrocytes and glutamate," I came across this: Astrocytes and Glutamate So, in response to eljomom, maybe by modulating glutamate, you can "block gap junction channels or specific signaling pathways," or perhaps the action of blocking those channels or pathways is what results in effectively modulating glutamate in the brain. We've been using lamictal successfully for several months now, and it is thought to block sodium channels and thereby control glutamate release. Maybe this is along those same lines?

My son was on XR, also, and he had been complaining of tummy trouble (looking back, I realize it was more than likely an obsession manifestation, rather than a genuine complaint), so we decided to try some enzymes. About a week after we started the enzymes, his behaviors started ramping up again, and like we all do, I was trying to figure out what was behind it. I think someone here first mentioned a possible interaction with enzymes (many moons ago), and then I did some research; found the following warnings on a number of web sites: There is one caution with time-released medications and the specific enzyme cellulase. Some time-released medicines or supplements use cellulose to slow down the digestion and release of the product. Not all do. Cellulose is virtually indigestible in humans since people do not produce that enzyme internally natually. If you take an enzyme product with cellulase (the enzyme that breaks down cellulose), the cellulase may break down the cellulose in the medication and mess up the time-release design. If you are taking a time-released medication and want to use enzymes, please consult with your doctor or pharmacist. If they feel it is a concern, you could see if there was another time-release formulation for that medication, or use an enzyme product without the particular enzyme cellulase. This forum is a veritable Encyclopedia of info! Thank goodness!

We tried enzymes for a short time but found out the hard way that they can interfere with time-released medications. Our DS takes Augmentin XR, for example, and that is not a good mix with enzymes because most contain cellulase, which breaks down cellulose. And cellulose is a common compound used for time-release medications to slow down their breakdown and absorption in the body. So, if your kids are taking Augmentin XR or even a time-released B-complex vitamin, just be aware of the interaction between those and many enzyme supplements.

Bump! I'm hoping to make it and will make sure to respond definitively by the RSVP date! Really looking forward to meeting everyone who can attend!

Peggy -- Sorry that I know absolutely nothing about thyroid function or any of the things you and Allie seem to be migrating through at this point. But I wanted to offer some cyber-support. You're such a strong, tireless mom, but I know it wears on you! Please hang in there, and hopefully someone here will have some ideas for you.

OCD is hard, and fighting it is hard work. So our kids would, of course, prefer to stay home in an environment in which they feel they have more control, less stress, less expectation, fewer rules and fewer strangers. Plus, let's face it, they know we know what they're about and what their triggers are, and we tend to help them "get around" those things just to keep some semblance of peace in the house. But their peers and the teachers? Even if they "know" about the PANDAS/OCD, they're less likely to know how to react when it appears before them, like we do over time. As for the ADD-type behaviors, those are most likely part of the PANDAS, in our experience. When the PANDAS and our DS's primary behavior set (OCD) are in remission, the ADD/ADHD is virtually nonexistent. Plus, most texts on childhood/adolescent OCD will illustrate how many OCD-related behaviors are frequently misinterpreted as ADD because the kid looks distracted when he is, in fact, attentive -- just to the wrong thing(s). He'll be focused on an obsession or a compulsion when he's supposed to be doing a math problem or taking notes in science, and the teacher or parent thinks he's lacking focus. He may even tell you that he "got distracted," but if you dig a little bit, you'll probably find out that he was thinking about something fairly intently; it's just that the "something" was something other than what he was supposed to be thinking about. Long way of saying . . . I'm not sure I'd move toward medicating it. We tried it, and it didn't work because it wasn't ADD or ADHD. It was PANDAS OCD, and it's only been through PANDAS treatment, OCD treatment and time that the distractability taken a backseat. Hang in there, and good luck!

Unless you're able to acquire and get him to eat organic versions of these "kid staples," chances are he's getting some nitrates, MSG and other pro-inflammatory components in the mass-produced versions. Maybe you can slowly introduce some other options and reward him for just trying them, one bite at a time. That has worked for us in the past; "You don't have to eat the whole thing. Just one bite, and if you don't like it, you're done." It's this method that's introduced him to some things he's surprisingly turned out to love, like asparagus and sushi! CVS has a dye-free ibuprofen; I know you can get it in the stores, but you might be able to order it online, too. Cognitive behavior therapy (CBT), inclusive of some Exposure Response Prevention (ERP) therapy (which is a type of CBT) works best for OCD and can help even with these "just right" kinds of compulsions and obsessions. My DS has the same kind of concerns, and therapy has helped him tremendously. If you're not sure where to turn for a good therapist who knows OCD and ERP well, try the "Find Help" button on the IOCDF (International Obsessive Compulsive Disorder Foundation) web site. You can search by location, patient age, and even the type of OCD behaviors (like "just right") that you most need to address. You might also consider picking up some books by Dr. Aureen Wagner; she's written some for parents and for kids, and she knows this "just right" variety of OCD very well. As for medications, these might help your son be more responsive to therapy and/or function in his everyday life better while in exacerbation, especially. It's important to know, however, that most every approved medication for OCD (mostly SSRI's) take anywhere from 2 to 6 weeks to build up to full efficacy, so they are not a "quick fix," even if they're right for your child. I would start with a therapist first. Even if they're a psychologist and not a psychiatrist who can prescribe, they should have adequate experience to assess whether or not your child is one that could benefit from the addition of medication. Sometimes, if the child is healthy enough to be receptive to therapy alone, and you're on the right path with your PANDAS child in terms of medical interventions, psych meds are not necessary. Good luck!

I know the feeling, believe me. I was in the same boat here, and I still tend to sort of "tip-toe" around the local doctors for fear of having them write me off as a crazy, "just-looking-for-excuses-for-her-mentally-challenged-kid" mom. It's infuriating, demoralizing and incredibly frustrating all at the same time! But I keep reminding myself that many of the docs (in my area, at least) are compelled to play the game by rules they themselves don't always set or like, so I try to meet them on grounds and at terms that they have less discomfort with, you know? Sort of a "catching more flies with honey than vinegar" approach. With our first local pediatrician, I walked into her office the day I got DS's blood tests back with the elevated titers with the lab results and a copy of "Saving Sammy" in hand inscribed with a personal note basically begging her to help us. When her receptionist saw the tear-stained look on my face when I walked into the office without an appointment, she asked me to wait a few minutes and she would try to "squeeze me in." Which she did, and at which point I basically broke down in tears in front of the pediatrician and used all of Beth Maloney's most persuasive phrases, like,"If you're comfortable with my 12 year old being given antipsychotic medication, then how could you possibly object to a trial of antibiotics?!?!" She agreed to help us, initially with a short prescription. So, from then on, I would drop her a snail-mail letter every few weeks, detailing DS's progress and usually including a few research papers or two about PANDAS, about the use of antibiotics for other "mental" conditions, about auto-immune disorders, etc. And she continued to approve renewals of the prescription . . . for the better part of 2 years! In the end, my last conversation with her still came down to her concern that she's "not even convinced that PANDAS exists," but she was willing to prescribe based on the "do no harm" part of her Hippocratic oath. She was encouraging me heavily to take DS to other doctors and specialists, so I knew she was about to reach the end of her willingness to walk this path with us. So we've switched to another pediatrician whom I know has treated another case of PANDAS with antibiotics, though we've yet to turn to him for our own prescription. I guess time will tell. But if need be, I'm not above resorting to tears and pleading again. It's all about DS, and my ego can handle playing the fragile, emotional female for a bit if that's what it takes! I cross my fingers, however, that it won't be necessary. Long way of saying . . . what do you have to lose by giving it a try?! What's he going to do . . . dump your child as a patient because his mother is seeking help for a "rare" disorder?! He might be more receptive than you think!