MomWithOCDSon

We had the same phenomenon. Within 48 hours of Augmentin, the improvement was dramatic. But that rate of improvement was never replicated again throughout the year. Rather, it's been a slow, steady climb out of the depths. The rocket blast only lasted a couple of weeks.

In general, you mean AFTER the infection has been 100% arrested, right? I mean, many of us came to PANDAS after years of going in other directions. In our case, we were chasing classic OCD for more than 6 years before finding PANDAS and trying abx therapy. In our case, our DS tested with high titers, suggesting that he was responding to a strep infection, even though we'd never seen classic symptoms. So we didn't know where the strep was hiding out . . . could've been his gut, could've been his sinuses, given his allergies and gastro troubles over the years. So, we put him on full-strength abx for a year; we just began lowering the dose to something sub-high about 5 weeks ago, and he seems to be hanging in there. So, in our case, no more active infection? I'd like to think that's true. I'd like to think that a full year of full dose abx finally wiped out every spec of "intracellular strep" in his body. But if strep really can go intracellular, does that mean that the longer one goes without treatment, the more places it may have found to hide? So the longer the actual treatment regimen must be followed? Or is it the case, as Momaine has mentioned, that the abx are doing MORE than just arresting an infection . . . that they're actually a helpful "supplement" for some that bring something else to the table? In our case, our DS presents predominantly with OCD, and Augmentin is a b-lactam abx, which class of abx is thought to have glutamate modulating properties, and OCD is now thought to have a connection with unmodulated glutamate in parts of the brain, SO . . . . . . . Research, research! Who's going to do the research we all so desperately need?!?!?! 100 years from now, people are going to think we were all so stupid and backwards not to recognize all the connections between brain and body science! I don't know, either.

Absolutely -- there are papers out there attesting to such. Plus, there are other characteristics of some abx (glutamate modulating, antidepressant) that may play a role, as well.

Our DS13 has an IEP. "Goals" are actually part of the framework, and they do apply to the child, though they also provide a guide for the staff to participate and help the child ultimately achieve a goal. For instance, our DS has trouble organizing his materials and feeling prepared for his next class; this disorganization and corresponding "uncertainty" and anxiety over the disorganization is a much bigger issue during exacerbation. So, one of the written goals in the IEP was that by such and such a point in time, DS would be able to organize his materials from his locker for each class, without additional intervention, guidance or help from his caseworker or another adult. The goals also include "steps" for achieving the ultimate goal, so steps for this instance included his caseworker helping him organize his locker initially, then helping him to pull the proper materials for each class for a while, then stepping back and only pitching in when DS specifically requested assistance, etc., etc., until DS reached the point where he had "achieved the goal" and could handle this set of tasks on his own. So, depending upon your DS's behavior set during exacerbation (and does any of it linger to a lesser degree outside of exacerbation so that it cues the staff as to what to look for . . . as in, an "exaggeration of . . . "?), you could set goals accordingly. Let's say that, when he's been exposed, he cannot handle scissors appropriately; he gets frustrated and refuses to participate in the activity, or he hurls the scissors across the room or cries, etc. Maybe even outside exacerbation, he finds handling the scissors challenging. So the goal could be something like "DS will be able to cut simple figures and straight lines with appropriately sized scissors." Then he would get the necessary help, support, encouragement, patience, etc. from the teaching team/caseworker to achieve that goal over time, with practices provided, no negative consequences if he doesn't complete an activity, alternate activities made available if the primary one is too frustrating for him, etc. It will be tricky if your DS has absolutely no sign of age-inappropriate behavior or challenges outside of exacerbation or exposure, and those periods prove to be few and far between (crossed fingers!). Unfortunately, if that's the case, one of two things might occur: 1) the staff will become complacent, thinking that your IEP is "overkill" and the result of a hyper-vigilent parent and medical team, and they'll slack off keeping an eye on him, only to be really thrown if and when he goes through a new exacerbation; and/or 2) if he makes it through an entire year without really needing any of the accommodations recorded in the IEP, the school may recommend it be terminated. I've been told more than once that if our DS doesn't utilize the accommodations provided him, they can and likely will be stricken from the Plan. That's probably more the case in the upper grades, but something to be aware of. On the other hand, what can also be written into the IEP and will likely hold, in and out of exacerbation, are accommodations that help keep his exposure low, like allowances for extra hand-washing, alternate activities in a "quiet corner" of the room with 1 or 2 other visibly healthy kids if there's another kid or kids in the class snuffling or sneezing or seemingly otherwise likely to exposure your DS to something he'd be better off without being consistently in proximity to. Same-day notifications to you regarding strep or other illnesses in the classroom. Stuff like that.

Smarty -- Once again, I find myself thinking that you and I have twin sons of different mothers! It is uncanny how similar our DS's paths have been, though they're several years apart. Then again, PANDAS kids sort of "specialize" in being "singularly odd," don't they? Here's one thing I can state with complete confidence: in the depths of exacerbation, the social struggles are far more exaggerated than they are during healthier times. Similar to your son, ours has almost always had some social "differences," particularly among his peer set. He's very comfortable around adults . . . almost abnormally so . . . but somehow the rules of interraction with kids around the same age can be tough for him. Sometimes I think it's because kids his age don't make the kind of allowances for him that adults do, or that they don't "ooh" and "ahh" over his precociousness the way many adults can. So over the years, he has frequently preferred his own company when offered only that of other kids his age. As time has gone on, he's selected a couple of good friends for himself, and he's getting better and better at dealing with and accepting other kids in the mix, but he still frequently refers to them collectively as "the kid," as though he's not one of them himself. Lack of focus seems to come with the territory, too. Especially if the academic subject matter, or the way in which it is presented, is not engaging. If your DS seems especially bright, you might want to "turn up the heat" a little and challenge him beyond grade level, especially in subjects for which he shows particular aptitude. Our DS has far fewer issues, for instance, in his gifted education classes than he does his "regular" ones; in those, he frequently gets bored, tunes out, decides to focus on a distraction rather than the matter at hand, etc. Another thing we've found is that "drilling," as in lots of math problems predicated upon a particular concept, or experiment after experiment in science designed to illustrate the characteristics of mass and density, can be counter-productive for him. He gets it after one or two problems, and the first experiment; after that, it's all boredom and an exercise in busy work, and he'll either refuse to do it at all, or he'll drag his feet to the extent that he runs out of time for completing Problem No. 10 or Experiment No. 3. It can be really hard to get this idea across to the school and the teachers; we're still working on it. As for therapists, psychs and other professionals who can help you with all this, or should you even LOOK for this kind of help . . . . my personal opinion is "yes," if you find the right person/people, it can help a lot. It's just really hard to find the right people, I think. I hear the argument that PANDAS is a medical condition and that, for some, once you take care of the underlying medical issues, the behavioral/psychological ones go away on their own. But in our case, that just hasn't happened. I don't know if it's because he's suffered with it longer, or because he's older, or because he would have some of these tendencies/behaviors even without the underlying medical issues. But because we were already well underway with ERP therapy and social worker sessions at school before the PANDAS diagnosis, it seemed natural to continue with them. And I know without a doubt that they've helped us during exacerbation and even now, as DS's health has improved dramatically over the last year, these interventions continue to help him and us with the "residual" (or lasting) OCD behaviors and his social challenges, especially at school. The ERP therapist we finally found after 5+ years of trying different people, some of whom didn't have a good rapport with DS or us, and some of whom didn't seem to really know how to contend with DS's substantial OCD. The school social worker is young and relatively inexperienced and, at first, I thought his two weekly sessions with her might be a waste of time. What's manifested, however, is that HE's taught HER quite a bit about his OCD and how his "social thinking" works (and fails to work), and they've found a way to communicate and put some collaborative ideas into practice in terms of how DS functions socially in school with his peers, with his teachers, etc. It's really hard, and frankly, while I feel our family has finally begun to emerge from the tunnel, I don't expect an "end" to this in any permanent sense. I think we're dedicated to ERP and social therapies at least through the high school years, and maybe even beyond. The positive side of this, for us, is that its giving us all this fabulous, bulky tool kit that helps us as a family deal with all of the little things, and supports us during exacerbation (should another one come), too. Our psych once described our DS as a "mixed bag," but that's pretty much the way so many kids here seem best described. Ticked off one minute, quiet and subservient the next. Focused at this point, bouncing off the walls at another. It's frustrating to a lot of professionals who would like to label our kids with some condition or another but, in all good conscience, CAN'T professionally do so because the behavioral displays are all over the charts! I think our psych is actually GRATEFUL we finally arrived at a PANDAS dx because it took the onus off him to figure out what else DS could have that would bring all these wildly varied behaviors into play! Hang in there! And put some feelers out for some therapists who might be helpful. Then, if you decide to try one, give it a little time before you draw a conclusion about how impactful it is; results won't be instantaneous in most instances, but if the fit is right, it can be very helpful. Good luck!

Meg's Mom -- Regarding recurrent ear infections . . . our DS had the same problem for many years, though the tubes helped dramatically. Just wondering if you've ever considered chiropractic adjustments in response to heading off the infections? Beginning at about age 2, when we could see our DS beginning to get congested, or a cold was going around or whatever, I'd take him to a kid-friendly chiropractor. I would lay down on the table, and lay him on top of me, and the doctor would gently adjust his neck and shoulders. Inevitably, that adjustment would help his drainage be more effective; before, he was almost ensured of getting an ear infection on the heels of any cold or allergy attack because his ears' ability to drain naturally was so poor. I'm also a big fan of guafenesin, found in many over-the-counter congestion rememdies. It really thins out the mucus and makes it easier to drain. Though, now that I know about NAC, I think it has the same properties, without all the bitter taste of the liquid guafenesin.

Mom -- Most peer reviewed papers/research I've seen have to do with effectiveness and dosages of abx for other, sometimes related, conditions such as rheumatic fever. I think Swedo and her team published on the effectiveness of penicillin during her initial PANDAS research, but I'm not aware of any more "modern" or "cutting edge" studies reflecting the use of today's most popular/anecdotally effective abx. What IS out there, however, are articles regarding some of the other properties various classes of abx bring to the table, such as the fact that macrolide abx (such as azith) appear to have anti-inflammatory and immune modulatory properties, and b-lactams (such as augmentin) appear to have a glutamate modulating component which assists PANDAS kids who represent with OCD behaviors. Overall, it seems to be more of an anecdotal history of response or lack thereof. If you use some of those search terms suggested earlier in the thread, you should come up with some links to papers on the topics noted above. Or feel free to PM me with an email address and I'll gladly forward you whatever I have. My library's been growing substantially for the last year or so!

Cassi -- You need intervention NOW if your daughter is threatening to self-harm! I hesitate to tell you to go to the hospital because being admitted to the psych ward there will probably be very traumatic for her, especially if none of the docs is hip to PANDAS. But you obviously can't just sit by and wait! If risperadol does to your DD what it did to my DS, it will probably make her more restful, potentially even sleepy. This would at least serve as a temporary intervention to her uncontrollable behavior, but it is obviously not a long-term solution. You MUST know that the Cunningham test is NOT yet considered the diagnositic definitive testing for PANDAS; PANDAS continues to be a clinical diagnosis based upon strep exposure, sudden onset of symptoms/behaviors, increased antibody counts, etc., in addition to the Cunningham measures. Have you had a strep culture taken? Have you seen a pediatrician familiar with PANDAS? Can you find one who will treat IMMEDIATELY with antibiotics? Also, you might consider lowering the Zoloft dose; if your DD has PANDAS, 50 mg. may be too much for her, and it may be activating her. Have you noticed any correlation between beginning the Zoloft and an increase in her behavior? If so, I would talk to your doctor about cutting that dose in half; give the doctor a copy of Dr. Tanya Murphy's paper on this topic if he/she balks at decreasing. I'm no medical professional, but if I, as a parent, were in your shoes, I would probably try the risperadol (it is a quick-acting drug) temporarily to take your DD "down off the ledge" she appears to be on. I would simultaneously talk to the doc who prescribed the Zoloft about trimming or even potentially stopping that dosage. And I would get some antibiotics FAST! Don't wait for Cunningham's results to see if the antibiotics will have a positive impact; that impact can be part of the diagnositic criteria all on its own.

Pam -- Is this dose intended as a response to 1) a current infection, 2) an ongoing PANDAS treatment or 3) prophylactic? I think if you look up 875 mg. Augmentin, 2x daily, you'll find it is probably adequate for treating certain infections, including strep. There's a lot of anecdotal information out there, though, that suggests that perhaps either the XR (time-related) formulation of Augmentin or Zithromax are more effective at treating PANDAS. It could be because regular Augmentin's half-life is quite short, whereas Zith's half-life is very long (something like 73 hours, if I recall correctly), and the time-released formulation of Augmentin (XR) would theoretically leave the drug active in the body longer than the regular form, also. On the other hand, I understand that some find the regular Augmentin to be more effective against PANDAS, perhaps because it actually has a higher clavulanic acid component than the XR version. Lots of bodies of thought, unfortunately, and none of them necessarily applicable in every case; all our kids seems to respond differently to medications. You might search here on the forum for "XR" or "zith" or "clavulanic acid" or similar terms to get a broader perspective on the topic. Good luck!

so mom -- am i correct in understanding your first step down was cutting the dose in half? After the full year on the 2,000 mg., yes. We had tried cutting back a few times months ago, shortly after we began the whole PANDAS thing. He would be on full dose for a month or two, we would sense a plateau, and try cutting back. But his regressions back then were always so dramatic and "full-force" that we felt compelled to put him back to full dose again. So we let the full dose ride uninterrupted for the last 7+ months, until we'd hit the one-year mark. Now we give him 1,000 mg. XR in the morning, before school, and that's it. We're into Week 4 now of the reduced dosage . . . further than we ever made it with a reduced dose in the early months of treatment.

In our case, it was literally a matter of days, but we were going from no medical treatment at all to our first try at abx. Throughout the year, we've had plateaus, fall-backs and gains, but the overall trajectory has been positive. Over time, we had to learn not to panic about some of the fall-backs (saw-tooths) and focus on the overall gains. We're still not 100%, but after probably 10+ years of PANDAs and 7 years of OCD, we're prepared for a "new normal."

Our DS is also 13 and took 2,000 mg. Augmentin XR for one year; 4 weeks ago, we decided to try stepping him down to just 1,000 mg. of XR, and it has been going well. I credit the long-term use of XR for bringing our DS and our family back to some semblance of "normal."

Peg -- From our experience, this falls into the category of "obsessive thoughts," and it is one of the most insidious, hardest to address pieces of OCD we've had the misfortune to confront. I mean, you can help block some of your child's OCD behaviors, but how do you block or stop them from thinking a thought?!?! Our DS has expressed, and his ERP therapist zeroed in on the fact, that the reason he keeps circling back around to the distressing thought is usually one of two reasons: 1) he thinks if he "keeps it in mind," it'll help him avoid doing whatever it was he did originally that upset him; and 2) he thinks that if he analyzes it enough, he'll figure out WHY it bothers him, figure out that "equation" of the distress and be able to "solve" it. Yours is even a more special circumstance as your daughter is nonverbal. We started our DS with a "chant" or "mantra" when the thought would creep in: "X won't hurt me. X doesn't control me. I don't have to get made at myself for X." Is there any kind of equivalent for your DD? Maybe a white board? Or maybe you could replace that distressing thought with a thought of something she especially likes . . . a song, a color? Basically give her something pleasant so that she can eventually turn the association around from something unpleasant to pleasant? Maybe Meg's Mom will have some more/better ideas for you, too. Sorry you're having to deal with this.

I personally think this is the Number One Biggest Drawback with the use of these SSRIs, and probably not just with kids. Certainly it is wise to exhaust all other available options before moving to psychiatric medications in children. If anti-inflammatories and natural serontonin boosters like 5-HTP or inositol are capable of supporting your child while the abx does its major, primary work, then that's great. But for some, like my DS, those other remedies may not be sufficient. And then you have to reconsider your options. But I know from our own experience, before hearing about and then fully embracing Dr. Murphy's study and advice, that even psychs who should know better will sometimes reach for a dosage increase too soon, out of impatience, and as a parent with a suffering child, it can be easy to get sucked into that, too. Well, if a little helps a little, then a little more will help a little more, and a lot will help a lot. But we know now that this is not the case, and that SSRIs can take an extended period to reach full efficacy (can be as much as 6 weeks), so reaching for more, and especially reaching for more too early and too fast, can bring you to that point where you're unknowingly and unintentionally overdosing your kid and therefore activating, rather than calming, them. Hence the "bad rap" for these drugs as a class in general, perhaps undeservedly, when it is really impatience behind the dosing and scheduling that deserves the negative press. Just another opinion for the mix here.

Our ped has told us that DS will likely respond with increased titers when exposed to strep, even though he won't actually "catch" it because he's still on abx. In fact, she told us this back in the summer when DS was still on full, high-dose abx (2,000 mg. Augmentin XR per day) and we took him in because we were concerned that he had been re-exposed and we wanted a culture.

I can only answer with our experience. Our DS is taking both abx and low-dose Zoloft and, yes, it has helped him. We found that, even after a year of high-dose abx, he continued to struggle with OCD and some signs of depression . . . mostly castigating himself and taking minor setbacks very hard. The Zoloft seems to have helped him maintain a more positive outlook and remain resilient, even when he has a hard day. I'm sure you've heard the cautions regarding SSRIs and PANDAS kids, though: dosage needs to be low and slow or the kids may get activated, rather than helped. Also, you'll need to keep in mind that most SSRI's are anything but a "quick" answer; they can require 4 to 6 weeks to reach full efficacy, and you may not see ANY significant improvements in your DD for about 2 weeks or so. All our kids are different, and I know that some have not had positive experiences with SSRI's. But our experience tells us that, for our DS, this is another tool in our PANDAS kit that helps him get back to his regular life.

SFMom -- Many months ago, you turned me (and probably some other PANDAS parents, as well) onto bentonite clay. We have never used it to the extent you were at one point (lower doses and lesser frequency), but given your DS's current gut diagnoses, I feel like I need to ask if the current doctors have found any correlation between bentonite use and some of these latest manifestations? Especially the intestinal wall issues. I'm wondering if some of that might not be a side effect us other users of bentonite might want to take into consideration. Thanks!

Will be thinking of you and your family and sending you positive vibes, light and love from afar. Just know that you have been invaluable here with support and ideas, and all of that good karma will return to you tenfold in your time of need. Hang in there!

We use quercitin (it's called QBC Complex by SolaRay, and it's combined with bromelaine and Vitamin C). It has done wonders for DS's allergy symptoms. Actually, curcumin and tumeric are two different things (I originally thought they were related, also); I think curcumin is related to cumin, though. We give these to DS also in capsule form as we don't cook with too much of either of these in our house.

Certainly, strep, myco p and lyme are just the tip of the iceberg! Remember that web site, "Stop Calling It Autism," where the family found that their son's autistic symptoms had been caused by a herpes virus? Bet that kid would have basal ganglia inflammation and higher CamK to boot! What about irratic behavior in elderly people with UTI's? It would be wonderful if they could examine ALL "mental illnesses" to see if there is a cohort between the manifestation of the illness and CamK, but don't they have to narrow it down, at least in the beginning, just to get all this rolling? Don't we run the risk of diluting the resources and results if we try to throw too many things at it at once?

And here's our list: - excused tardies for classes (takes DS longer to get organized, pick up things from locker, etc.) - permitted to keyboard rather than handwrite assignments (small motor challenges during exacerbation) - permitted to have copies of classroom notes from another student or from the teacher, rather than being required to take all notes individually (again, small motor issues) - permitted to take timed tests (such as state standardized tests) untimed - permitted additional time for standard quizzes/tests as well as homework - permitted alternative assignments for "arts & crafts" style assignments (color this, draw that, cut out this, etc.) - permitted alternative activity to P.E. gym activities Good luck!

That stinks, Dad. Yeah, schools are petri dishes and some kids are like the agar on a slide, soaking it all up! It really does sound like, in addition to PANDAS, your DS has some sort of immune deficiency. I'm with MegsMom . . . check those tests or have a new panel done, maybe. I know Dr. K. ordered one for us after our first consultation; in our case, our DS has no deficiencies, which would explain why he is rarely ill and even the strep that set off his ASO and AntiDnase-B didn't show up in a classic way. Sounds like your guy could use some immune support, though. Have you tried any of the supplements? Omegas? Probiotics? Vitamin C? Not a wonder-cure, certainly, but they could help to some degree.

I had to chuckle derisively at those couple of sentences -- not that you said them, but how true they are. No offense to any physical education teachers among these ranks because I'm sure that you are unbelievably observant and sensitive to challenged kids, knowing what you know from your PANDAS life experiences. But our DS has had nothing but blind and ignorant physical education teachers for the duration of his academic experience to date, and that's been 8 full grades! Last year, when the exacerbation first hit, we actually scheduled a special meeting with the P.E. teacher, the school psychologist and the head of the P.E. Department because the teacher kept downgrading DS via her "rubric" because, in volleyball, basketball, etc., instead of going for the ball, DS would back off and let one of his more enthusiastic, athletic team mates take it. DS's take on it was he isn't very athletic, he'll miss the shot and get scorned or stared at for poor performance, and he's not comfortable scrambling in a group of kids for the ball anyway, so why not do what's best for his team and let someone more capable take the ball and make the shot?! She read it as lack of effort and team spirit, however. Plus, it didn't make her "rubric" for "skills," to which I promptly told her that making a basket wasn't a "life skill," but learning how to advance the best efforts of all the members of your team WAS a life skill, and he should be rewarded appropriately for knowing what best served his team! Then I also explained that he has a condition that makes him anxious, and "mixing it up" with a bunch of other boys stokes his anxiety, so that contributes to him backing off, also. To which this woman actually replied: "He doesn't seem anxious to me. I've seen no signs of anxiety." This, in the midst of an exacerbation that, less than a month later, made him incapable of attending school at all! I wanted to throttle the clueless wench.

Obsessional thinking can be a MAJOR part of OCD, so if OCD behaviors play a significant role in your DS's PANDAS symptoms then, yes, I think you've appropriately identified this as part of the PANDAS. I assume your DS is undergoing treatment for the PANDAS via abx or some other medical means? In addition to this, I would suggest finding a good, well-trained therapist who will use Cognitive Behavioral Therapy and/or Exposure Response Prevention to help your DS learn to contend with and move past those obsessive thoughts. It is very challenging; I know from experience with my own DS. You can try to "reason out" with your DS how these thoughts and concerns are an "over-reaction" or an "exaggeration," and then maybe set up a rewards system for him NOT confessing and NOT melting down over a thought. A good therapist will have some ideas and exercises for helping you and your family meet these behaviors head-on. MegsMom is very well versed in most aspects of OCD, too, and her DD is closer to your DS's age, so she will hopefully chime in here, too.

How old is Pixie and what grade is she in? Does she have a 504 Plan or an IEP at school, or has the school been willing, up to this point anyway, to grant her some accommodations even without a formal plan in place? I would ask for an alternative activity for the running. If her endurance is compromised by her medical condition, then that's an entirely fair request. Our DS13 actually has an alternative activity to P.E. entirely, through his IEP. He has an "at home" exercise program and reports that activity via a log to the health teacher, but he does not participate in P.E. classes during the school day due to the extra stress that accompanies that particular undertaking.