MomWithOCDSon

I can only reiterate that penicillin did not work for Sammy Maloney, per the book, while the Augmentin XR, as you have already experienced, did. Also, if the PANDAS behaviors have not significantly or entirely abated, why would one move to a prophylactic dose? It seems premature, at best. Unfortunately, it seems like it might be second-opinion time.

We're on another network right now (HBO). What's on "20/20"?

I will echo that our DS has always enjoyed firm pressure, predominantly on his torso; when he was younger, he would climb between the couch cushions and ask us to sit on him, just so he could get the pressure. Now, when he's transitioning to a stressful activity (like homework) or getting home from a long day at school, he'll ask for a hug . . . which he always gets! Who could turn down a reasonable request like that! He also founds a warm shower calming these days, and swimming is a favorite athletic activity, mostly because he likes the feel and the pressure of the water surrounding him. Thanks for the links and reading suggestions, Kim. I would be great to be able to continue to "update" the sensory helpers as our kids get older and a hug from Mom in front of the peer group isn't exactly "cool" anymore.

No, actually, the glutamate issue is with respect to OCD, plus I mispoke; it's not a "deficit" of glutamate, but rather a failure to modulate the amount of it overall in the brain. There was a study done at, I believe, Wayne State, in which a series of MRIs performed on OCD kids versus non-OCD kids revealed that OCD kids had higher levels of glutamate active in their brains, and the thought was that these higher levels attributed to an OCD person's greater challenge in "switching off" thoughts rather than perseverating on them and/or circling back to them over and over again. I saw the study referenced and the chief researcher interviewed on a "Dateline" episode about kids with OCD. Then, more recently, one of the other parents here introduced me to the fact that there is a trial currently going on involving a drug called riluzole that might help the modulation. Here are a couple of links I found on the topic: Glutamate-OCD Study "http://www.neuropharmacology.com/rilutek.htm

GUTI! I love it! So much more ring to it than our old stand-by: "Just move on!" And this is "habituation" in the cold-turkey sense! I love expanding the vocabulary . . . . !

Sorry, Fixit, I know how frustrating this can be. That's one of the reasons I qualified the "diagnosed with PANDAS" with "(official or unofficial)," because I know many people here, myself included, have only self-diagnosed up to this point. Like you, if abx improves the behaviors, and/or if steroids improve the behaviors, then you might conclude that your kid likely has PANDAS. Then there's all the immune testing and CamK testing which, though I don't know that anyone (including Dr. T.) has identified these as "fully diagnostic" at this point, can support a PANDAS finding. We haven't done that testing yet, either. If I were you, I would go see Dr. T. or Dr. K. I've got my mind on Dr. K., personally, if my DS13's condition should stop improving or deteriorate. It's one day at a time for us at this point. But it seems like you're at the point where you need to reach out for some more experienced help. Go for it!

The first thing that strikes me about your post is, " i've stated many times that he doesn't seem to have complicated thougths with things - maybe that why - could it be a sensory issue vs. ocd thoughts?" A light bulb just went off in my head with respect to our DS13, and I think you're on to something! Our DS doesn't seem to have "complicated thoughts" about a number of things, either, but then in other trains of thought, he can analyze the crap out of it! Maybe it is the sensory and the OCD sort of duking it out for dominance? And sometimes one wins, sometimes the other? I read "The Out of Sync Child" several years ago upon the recommendation of a friend of mine who is also a teacher, well before our PANDAS dx but during the time that we had an OCD dx and felt like sensory issues were also at play, perhaps either exacerbated by or brought about by the OCD. Beginning very young and up until this day, DS13 would wear only one brand of socks, and tolerate one pair of shoes at a time until they were absolutely destroyed, and then finding another paid that he would deign to wear was always an adventure. He couldn't stand any tags in his clothing (that goodness tagless has become more of a norm now), nor would he tolerate pants with pockets that could bunch up (like Dockers); he won't wear jeans because they're too hard and stiff. He had recurrent ear infections as an infant and toddler, so we initially thought that his acute hearing sensitivity was the result of his hearing improving markedly following a tympanostomy and, finally, a lack of fluid in his ears that had previously muffled and distorted sound. But that sensitivity has continued as well. We had DS evaluated for Sensory Integration Disorder (SID) when he was 8; the psychologist came back with the conclusion that, yes, he has SID, though none of it was "off the charts." He also displayed balance and small motor challenges as of the date of the evaluation. They recommended some physical and occupational therapy, which we put him through for a few months, but his overall sensory sensibilities did not appear to improve at all as a result. Maybe we were too quick to pull the plug, but the therapy seemed to make him more miserable than the SID; for him, it was just a part of who he was, and he didn't feel there was anything there that needed to be "fixed," even if his sensibilities did send me all over the universe in search of clothing he would actually wear! As his OCD behaviors have continued and "morphed" to some extent with his physical, emotional and mental maturation over the years, and then we've found some relief through the PANDAS dx and an abx regimen, I have begun to think of the "out-of-sync" stuff as pretty emblematic of the "mixed bag" of behaviors that so many of these PANDAS kids present, including mine. In our IEP meeting, it was revealed that his testing with the school psychologist indicated a low-level autism-spectrum processing; that was the first we'd heard of that. But when you combine that "finding" with our personal experiences with him at home over the last 12 years, along with the psychiatrist uttering everything from "OCD" to "ADHD" to "bipolar" at various points in the 5 years he's known DS, you start to see that this basal ganglia inflammation, deficit of glutemate, a combination of those or even perhaps a host of other pieces of the puzzle too, bring all of these very general labels for various sets of behaviors to the fore. The "disconnect" between what your son reports of his day (enthusiasm, positive stories) and the way the teacher reports it is interesting; what does your son say if/when you confront him with discrepancies between what he thinks happened and how his teacher sees it? We sort of have the opposite going on: DS will report that he was disruptive at this point in time, unfocused at that one, talked out of turn here, poked fun at a kid there, but when we consult with the teacher, she/he inevitably reports that DS is doing well, fits right in with his peers in terms of his behavior, and is not disruptive in unequal measure to the rest of the class. So I figured it was a version of OCD scrupulosity that was kicking in with DS's perception of his day, and we just have to disabusive him of his out-of-sync level of concern in this regard. Maybe your DS needs prompting in the opposite direction -- make him more aware of how his behavior is perceived? Or, there's always the possibility, too, that the teacher's perceptions are somewhat "out-of-sync" on there own. Has she, perhaps, reached a saturation point and just doesn't have the personal resources to manage your son's (or maybe other kids in the class, too) more eccentric bits of behavior? I know teachers start to get burnt out by about spring sometimes, and their tolerance levels overall can hit the proverbial wall.

We've had exactly the same experience, so Worried Mom, don't get too discouraged. If you keep tracking the behaviors over the long term, I believe you'll see a pattern emerging where the setbacks/meltdowns become less and less frequent, and even when they happen in the face of fatique or stress, your daughter will be able to recover more quickly. Hang in there, and give it a full chance. If, after another few weeks, you truly cannot see a continuation of overall improvement, then it might be time to try another treatment.

LOL! You crack me up! Thanks for "voting" with a post, anyway!

We have such a broad base of experience here on the forum, and I know some of you have been around a lot longer than I have! I thought it would be interesting and maybe even informative to take a very quick, elementary pulse of the basics among us. We're only about 5 months into our PANDAS diagnosis, and we've thus far implemented only abx and supplements. We're currently working with our local doctor, a pediatrician who's known DS13 since he was 2, and she's been very open, curious and studious about PANDAS, even though it is relatively new to her. Thanks for joining in!

Hi Stage Door -- I don't personally suffer from clinical OCD, but my son does, and I have watched and admired him as he has struggled to have his intelligence, kindness, commitment, creativity and capability shine through, despite the sometimes extreme and always unique challenges of OCD behaviors. Therefore, I have a few ideas for you: The two that come to mind are tenacity and self-reliance. No matter how much your friends, family, therapist, doctor try to help you get past a compulsion or obsession, in the end, it has to be you that slays the beast for that moment and moves forward. And sometimes, you have to slay that same beast again and again, for several days in a row, before it cowers in a corner long enough for you to catch your breath and move on to the next challenge. So, you're not easily thwarted from a goal, and you have confidence that you can pull it off. You're ready. You have a hard-won level of maturity, circumspection and awareness that you would not have were it not for what you've been through. I guess I'd refer you largely back to Essays One and Two for this answer. To live with OCD and still learn to be a productive, contributory creature on the planet takes an extraordinary amount of conviction and perseverence; you also have to learn to be creative and "think outside the box" because what might be a simple undertaking for a non-OCD person presents a considerable obstacle for you. So you're likely creative to the point of "MacGyver-ish" in terms of being able to cobble together solutions that work for you. You're probably also more sensitive to others and operate mindfully in a team environment because of your own personal struggles and the awareness that comes along with that. What a GREAT question!! What about "perseverence" or "mindfulness"? Not to be flippant, but since you've said this is optional and not so important . . . how 'bout the fact that because of your disorder, you are prone to being a "nit-picker" or a perfectionist, so along with that famously required tenancity for controlling the OCD so that you can function in the world, you can allow a portion of that same OCD -- the perfectionistic piece of it -- to help drive you toward any goal you seek. When it comes to quantitative analysis, OCD can actually be of benefit! (I don't know about you, but many people I know with OCD, including my son, are EXCELLENT at quantitative analysis, I think partially because it is inherent in the same "wiring," but also because he just won't give up until he has the problem worked out!) You've lived through some exceptional life experiences that have informed every choice you make, every position you take, and every perception you have, not only about yourself, but about the world and how it works. You don't make decisions lightly, in fact, you may perseverate especially long over your choices, and therefore your commitment, once made, is unasailable. Good luck to you!

Synchronicity. I got an email today from my son's school psychologist, with links to this WBEZ story. She said she had just heard it on the air and thought I might be interested in it. (I spent about 2 hours on the phone with her last week, downloading our entire PANDAS story to her, and followed up with some web links, articles, etc. so that she could get more familiar.) Anyway, I found myself standing on a gianormous soapbox, regaling her with more Tales from the Forum and recounting my own DS's progress (which she has witnessed herself inside the school setting), just to make sure she wasn't going to be inclined to give Shulman any due. It's exhausting, putting out these little "nay-sayer" brush fires that keep springing up! Like we have time and energy for THAT, for cryin' out loud!

My DS13, too, had CHRONIC ear infections as a young child . . . basically from 18 months until 3 years, when we finally bit off on a tympanostomy (tubes) because we just couldn't keep up with them anymore. SF Mom posted that article on an earlier thread when the topic of ear infections first surfaced, and it was a huge wake-up call for me! Originally, I'd thought DS's issues started at around school age, but I'm coming around to realizing that he exhibited odd behaviors well before that, intermittently, and that the ear infections may have been the vehicle of the original culprit! What I wouldn't give to be able to turn the calendar back so that I could parent him THEN with what I know NOW!

We just added organic tumeric to DS13's supplement regimen about 10 days ago, and so far, so good. He's taking so many supplements in addition to the abx, it is difficult sometimes to acknowledge any particular effect as being tied to any particular addition, but he's definitely feeling better and behaving better! Thanks for the blog!

Our DS13 has been on Augmentin October 13, 2009; he began with just regular Augmentin at 875 mg., twice daily. Then, we moved to Augmentin XR, 1,000 mg. twice daily (the infamous "Saving Sammy" dosage) on November 25, 2009, and he's been on that dose ever since. This past Monday, March 8th, we decided to try stepping down, gradually. So now he's still taking the XR 1,000 mg. in the morning, but his evening dose is now 500 mg. of regular Augmentin. It is still early in the dosage reduction, but interestingly enough, he actually seems to be doing slightly better than before; his mood is more consistently "up," and he's tackling homework more efficiently, with less avoidance and better focus! Knock on wood! It is reminiscent, frankly, of the first few days of abx many moons ago, when we saw sort of a dramatic improvement for the first 36-48 hours. Hopefully, though, this time it'll hold. I am interested in others' experiences in "downsizing" the abx over time -- what worked for them, how long they took between reductions, etc. Our pediatrician is very open and is committed to staying on board "for the duration," so while we're hoping he will hold and continue his improvement path on a reduced dosage, if he doesn't, we will notch it back up again. How have you handled your kids and their abx dosages?

Thanks Sheila, Chemar, whomever made this adjustment to the forum title! What a welcome "revision"! All the better to capture and embrace as broad a spectrum as possible when it comes to this disorder! Thanks!

Since I'm local (though I doubt I'm the only one here who is), I'd offered to find a convenient venue for an ACN forum "Match the Face with the Avatar" soiree. I guess, even now, it seems far enough off that we don't have to jump on that immediately, though I know time will fly and May will be here before we know it! Also, I think many had not yet made the final determination as to whether or not they could/would attend. My offer still stands, if anyone is interested. Otherwise, we can just check each other out and keep our ears open for turns of phrase that seem to mirror some memorable posts, and then silently, in our heads go, "Oh . . . you must be Mati's Mom!" Maybe we should post for a "roll call" closer to the date . . . early May? . . . and see if anyone's interested then.

Wow! I guess some guardian angel(s) were watching out for me when Shulman was too busy to take my call! I just do not understand the vehemence of these nay-sayers! What's in it for them?! Skepticism on some level I get, and I think it can be healthy. But I am really baffled by the vociferous negativity of these folks like Shulman who won't even meet the growing evidence with some level of professional curiosity. It's shocking, really, and says a lot about their character.

Thanks! Well, now I'm in the "lynch Shulman camp." Honestly, if these people don't have adequate familiarity with the disorder, why do they feel so dead-set on shutting it down for those of us who are benefitting from the research and exploration into, and treatment for, PANDAS?!?! Is this all ego?! I've written WBEZ via the "Comments" option on the web page, and I hope many of you will do the same. If they hear a great roar in response to the story, perhaps they'll follow it further.

Dr. Stanford Shulman is chief of the Infectious Diseases Division at Children's Memorial Hospital in Chicago and President of the Pediatric Infectious Diseases Society. Who is Dr Shulman He was one of the first referrals I was given locally when I wanted to explore PANDAS with my DS; fortunately/unfortunately, the guy is very busy, and his office did not return my call for over a week, by which point in time I had found another doctor willing to help us. I will say, though, that he is very highly regarded around here and appears to have a significant background with respect to rheumatic fever and Kawasaki's.

Ditto! I bet we could all co-host one heckuva party! Rachel has the margaritas; Fixit, what's your beverage of choice? I can make a mean vodka martini!

Tried to respond to you, but your inbox is perpetually full, you social butterfly, you! Looking forward to the next exchange!

Just to clarify . . . The AutismOne Conference is set, and the speakers' panel and agenda has been set for several weeks now. A link to the conference web site is below. AutismOne Speakers Schedule Lynn and Dr. T. have been asked to share a segment, so Lynn already has a "co-speaker," and it seems unlikely that it is up to her to set the speakers' list or adjust it at this point in time. I know Diana P. has been an invaluable resource to many here; she was one of the first people on the forum to PM me and welcome me when I first arrived, and the pandasnetwork site is a great resource, too. But if Diana wanted an opportunity to speak at this particular conference, then wouldn't she have sought it for herself? Or perhaps one of Diana's ACN forum friends should contact her and encourage her to seek a way to participate? IMHO, it is very generous of Lynn to post here offering to include some stories, information, thoughts from us here. In minding the old axiom that one shouldn't "look a gift horse in the mouth," I'm feeling grateful for this opportunity as it stands. I'd be happy to see Diana P. have a similar opportunity to be heard, as well, but that shouldn't diminish Lynn and Dr. T.'s contributions. Just my 2 cents worth . . .

Unfortunately, weight loss is a $1+ billion industry, so there's plenty of funding available.

I think my DS is very much like yours, except that he IS motivated by "doing well" and being perceived as a "good student" and a "good person," especially by people of authority. He's considerably less peer-sensitive, but when it comes to his teachers, he's all-in for proving himself to them . . . sometimes too much so. In fact, that can serve as the basis for his inattention and distraction; first he's flooded with the perfectionism, and then he gets stuck worrying about putting down the wrong answer or having missed a part of the teacher's instructions or whatever, and it seems to spin in on itself. Then he sort of "checks out" and lets the OCD/ADHD take him away mentally so that he doesn't get visibly overwhelmed and cause a scene. When DS was younger, we were able to use a rewards system similar to the one you've advocated. And it worked fairly well through, say, 5th grade. But now that he's older and the exacerbation that much more intense, and the rewards just by their very nature have to be grander to serve as adequate incentive, it's less effective overall. While the promise of a treat at the convenience store, his favorite food for dinner or even earned "points" toward a desired video game used to help motivate, those carrots just aren't juicy enough anymore. And we would go bust financially if we tried to incentivize him with anything substantive enough at his ripe old age of 13! Plus, frankly, sometimes what he REALLY wants -- like, literally, more hours in the day to spend as he would choose --- we're not able to give him. So, now that he's healing and more mature emotionally and mentally overall, we're trying to coach him about the inherent rewards in doing his best, staying focused and achieving his goals. And we're also giving him some additional leverage with Intuniv.