MomWithOCDSon

We tried Intuniv (Tenex) for a while for our DS; it's a non-stimulant ADD/ADHD med along the lines of Straterra. Initially, both we and DS thought we saw improvement in terms of his ability to focus in class at school, stay tuned in to his homework, etc. We started at 1 mg. and got up to 2 mg. over the course of about six months, and left it at that 2 mg. mark for another 4 or 5 months. But as DS's OCD behaviors improved, so did his ability to focus, and it seemed like the Intuniv wasn't contributing anything (anymore? or ever?). So we took him off. He's not taken anything in this vein for almost 3 months now, and we don't see any decline in his focus. In the end, I've come to believe that most of it was really just a manifestation of the OCD behaviors, and as they've improved over time, so has his ability to focus.

From time to time over the last 18 months, we've seen increases in our DS's behaviors, too, in response to being exposed to something . . . strep by a classmate, or even the norovirus at home . . . even though he never "actively" gets the illness in a classic way. Our pediatrician told us that, even on full-strength antibiotics, his system may produce antibodies due to exposure, though he won't "get strep" in the classic sense because the antibiotics are protecting him. It's frustrating, because here you are doing your best to protect and continue with a protocol that can work so well, but your kid is still vulnerable! For what it is worth, after a few rougher days in reaction to exposure, he usually regains any lost ground reasonably quickly and continues to move further along in recovery . . . so long as we keep him on the antibiotic. It's when we try to take him off the abx that he appears to regress and has a harder time bouncing back on the heels of being exposed to something, whether bacterial or viral. I'm sure it varies from kid to kid and the general well-being of their immune system, but if you can, I would stick with the antibiotics for at least a while longer (through the winter?), and I think you'll see her bounce back.

LLM -- Is Theralac available over the counter, or do you order it? We've also, from time to time, used Norwegian Gold probiotics that we get at The Vitamin Shoppe. They vary in strength but come in 20 billion to 80 billion units per pill, and the culture mix is pretty broad, too. Those, too, tend to run from about $0.50 to $1.00 per pill, depending on the size (units). Any idea how those compare to Theralac in terms of efficacy?

Actually, the real issue is that antibiotics kill bacteria. So even though there are some beneficial gut bacteria that are more resilient against antibiotics, dosing them too close to one another will not negate the positives of the abx, but it can/might negate the positives of the probiotics. We're giving probiotics to repopulate the gut with the beneficial bacteria that the abx are killing off, plus we're trying to keep enough beneficial bacteria and beneficial yeast active there to "crowd out" the "bad yeast," such as candida that can cause other complications. Unfortunately, one of the most common gut bacteria found in yogurt and kefir, acidolpholus, is not abx resistant, so those really have to be spaced apart from the abx to do any good at all. However, lactobillus GG ("Culturelle") and sach boulardis ("Florastor") are both abx resistant and can be dosed simultaneous with the abx if necessary.

Lactobillus GG has been recommended by everybody from our local pediatrician to Dr. Andrew Weil; you can get it most places in the brand name "Culturelle," and it comes in 10 mg. capsules. Sach. boulardis (one well-known brand is "Florastor") is another favorite because it's resilient to antibiotics and therefore can be dosed at the same time if necessary, plus it is good for diarrhea prevention. We also buy some mixed-culture brands, like Norwegian Gold and Nutrition Now's "PB8" (get 'em both at the Vitamin Shoppe), just trying to make sure his gut is populated with as many beneficial bacterium ilks as possible. Overall, we're giving in the neighborhood of 60 to 80 billion units daily; we were trying to give more at one point in time, but we discovered that they were contributing to an excessive amount of gas for our DS. Every kid is different, but he seems to feel best at this level.

I remember reading about this in the IOCDF newsletter. I believe Eric Storch is one of the trial leaders, and he works closely with Dr. Tanya Murphy in Tampa/St. Pete. Those folks down there definitely know PANDAS. Since you can Skype the sessions, too, if Fordham is not open to PANDAS diagnoses, I'm betting USF (Storch) would be.

Inositol can help, acting as something like a "natural SSRI," but it is not immediate. Like most SSRI's, it takes time to help build up the serotonin in the system, and you are advised to begin it at low doses and slowly trying increasing over time, too. So, unfortunately, it's not going to be of much help to you right now, when your DD seems to need it. Have you tried ibuprofen? If her behavior is linked to inflammation that may help some. I would also suggest some Valerian Root; it is herbal and works quickly . . . usually within a half-hour, in our experience. It is calming to the extent that it can take the edge off the anxiety and give your kid a chance to use any other self-soothing tools she's developed.

That's how you know it's OCD/PANDAS. It makes absolutely no logical sense whatsoever! At one point in time, my DS would freak out if his leg, knee, whatever brushed the side of the toilet and would insist that he had to shower again (sometimes within 30 seconds of having just exited the shower)! But he would quickly grab the game console remote on the display at Target, or pick up a muddy rock off the ground and tuck it in his pocket, without a single moment of "germy hesitation"! All that has pretty much evaporated these days, thank goodness, but it tries to turn your reality upside-down, doesn't it?!

Interesting . . . I've not heard this before. Can you give us a link to a paper along these lines? If excessive histamine levels are an issue, you might try quercitin, also; and it doesn't induce sleepiness, so it could be given in the daytime, as well.

While I can appreciate a hesitancy to move toward psych drugs, we've had a different experience, and that's mostly what I have to go on. When DS was diagnosed with OCD at age 6 (docs then waved off my PANDAS inquiries), therapy alone kept him functional and even happy for the first year or so. At his next exacerbation about 14 months later, though, therapy alone didn't help him stay functional; the OCD was too ferocious. I asked about PANDAS again and was waved off, particularly as DS was entirely asymptomatic. So we allowed him to begin a low-dose SSRI. JAG may be right; the SSRI may have "masked" his issues rather than addressed them, but he was solid . . . functional, happy, subclinical . . . for another 6.5 years. It wasn't until The Great Exacerbation to End All Exacerbations in 5/09 that none of the original supports . . . therapy or SSRI's . . . seemed to give him one iota of relief. That's when I learned that kids could be asymptomatic and still have PANDAS; we tested him, and when his titers showed up off the charts, we convinced his ped to prescribe abx. Except for brief intervals in which we tried to stop the abx, he's been on some dose of abx ever since. They made a dramatic difference initially, and I still hold that he continues to make gains behaviorally due to our continued use of them. That being said, he still struggled/struggles with anxiety and OCD behaviors. So after attending the IOCDF conference last summer and spending some time talking with and listening to a lot of docs, including Eric Storch who works with Dr. Murphy, we decided to try low-dose SSRI's again in addition to the abx. And, just like we chart and journal how DS has been doing with the abx, various supplements, etc., we've been charting him with the SSRI, and it is helping him. And I feel confident at this point that we know what we're dealing with to the extent that it's not masking, but actually helping at this point in time. I will say that, earlier on, the psych's natural inclination was to increase DS's SSRI dose when a lower one didn't seem to have the desired impact, and the higher doses did, indeed, activate DS. But now I'm wiser, and I don't let the dose get pushed up anymore. Psych drugs are not for every person, or every situation. And if I knew then what I know now and had it to do over again, I would've been giving DS abx at age 7 rather than Lexapro. But now, at the ripe old age of 14, with the OCD fairly firmly nestled into his psyche, I choose to approach this business holistically . . . I am going to treat him with everything at my disposal that helps. I can't let him hand over any more of his life to the debilitating levels of PANDAS and OCD he went through a year and a half ago or so now, so if SSRI's are part of that protocol, so be it. Nothing is off the table as far as I'm concerned. We wasted years with both mental health professionals and physical health professionals refusing to believe that the two systems could be truly linked in this way, and we still struggle with the specialists wanting to "corral" their territory of illness and ignor/eliminate holistic responses because they cross those territorial lines. I feel it would be unwise for me to buy into a similar "territorial" response and rule out a viable line of support in exclusive favor of another. Perhaps with younger kids, and with PANDAS that is caught more quickly and treated appropriately, psych drugs never even have to enter the picture. And even with our older kid, all the psych drugs in the world wouldn't have worked without the addition of abx, I'm certain. Also, just as there are a lot of things we're still learning about supplements and herbs and even abx in terms of their "accidental" properties (such as immune-modulation, anti-inflammatory, glutamate-modulation, etc.), SSRI's are now being discovered to have some "unintended" characteristics; I think it was EAMom who, not too long ago, posted a link to a study regarding the anti-inflammatory qualities of SSRI's. When I took it to our psych, he said yes, that there's been a lot of interest in that recently.

N-acetylcystein (NAC) is an amino acid available over the counter (the Vitamin Shoppe, Whole Foods, etc.) that has been studied and revealed to have beneficial effects for trichotillomania and OCD. My DS has been taking it for OCD for the last year or so. I would also recommend Exposure Response Prevention (ERP) therapy.

MMC -- Thanks so much for sharing your story. It's pretty remarkable, and I find myself feeling two very distinct things: first, I'm so happy to hear that you've "recovered" 100%, but second, the whole idea of 10+ years of antibiotics is incredibly daunting! How many years did you actually take abx, injections and oral, combined? Unless I've missed a more recent perspective or statement on her part, I don't believe Swedo embraces the idea of lengthy (multi-year) abx regimens, and I know our doctors are reluctant to carry on indefinitely in that vein, partially because of the literature on the topic coming out of the NIMH. Anyone else here been successful in securing 5+ years of abx for either themselves or their kids?

I realize I'm missing her voice around here lately. I hope everything's well with her and her son. Anybody know?

I'm not sure, and perhaps with conditions like PANDAS and tourettic OCD, the lines are blurred even further. "Straight tics," though, strike me as relatively simplistic movements . . . a jerk, a blink, a flex, etc. A movement that really could be involuntary or autonomic (like breathing) because the conscious mind doesn't have to get very involved, if involved at all, for the movement to occur. Whereas a compulsion, I think, requires more consciousness for the person undertaking it. So maybe it's a jerk PLUS a blink. Or a flex with a twist. Some more complicated (and, I'm guessing,typically lengthier) movement or strings of movements/gestures? My DS is pretty much only OCD in terms of his behaviors, but in full-out exacerbation, he'll do this thing where he'll walk, dragging one leg behind him the whole time. At first I thought, maybe that's a tic. But like norcalmom said, I found out he realized he was doing it, and he was compelled to do it because it soothed him somehow sensorily. Plus, again, it was anything but quick, and it took some real coordination (and thought) for him to motor around that way. I'm not sure that kids with "straight tics" get any sensations of relief from the tic. As fleeting as most of them are, you'd think that would be hard to achieve. But, then again, I've heard some folks (adults and kids) with tics articulate that sometimes they just have to let the tic out . . . that they feel compelled to, say, stick their tongue out, but maybe they hold it in for a while because they're in a public place or something. But as soon as they get the chance, where it won't be seen or offend anyone, they follow through with the tic. Now, is THAT a tic or a compulsion?!?! Certainly someone here with tics, or who have kids with tics, can explain it better to us.

I know the ASO registers more recent exposure (2-4 weeks, I think), while the AntiDnase-B registers a previous exposure/infection (6-8 weeks, as I remember). I suppose it's possible that, after multiple re-exposures, your "baseline" might permanently move up above a "normal average," and perhaps that is also reflected in the AntiDnase-B results? Buster had spelled these tests out some months ago; maybe check the pinned threads?

I stumbled upon a repeat of a 2007 segment of the MTV series "True Life." This one is called "I've got autism." The show is focussing on 3 teenagers, from age 16 to age 19, who have varying "degrees" of autism. One is quite severe and is non-verbal; however, he's finally communicating with his classmates at school with a device called a "Litewriter." He types on it, and it electronically articulates his thoughts; turns out his thinking, even socially, is quite sophisticated, but he just can't speak it via his mouth. He's 18. Another is a 19-year-old "autistic savant" who is an established artist, but his life is currently being disrupted by the increasing frequency of tantrums/meltdowns. He says he feels angry and confused, but he doesn't know why or what to do about it. I'm shouting, "Inflammation! Inflammation!" at the TV. He frequently wears sound-deafening headphones because standard noises, especially in public places, can be overwhelming to him. The third kid is a 16-year-old diagnosed with Aspberger's Syndrome. He's developing himself as a stand-up comic with a very dry delivery, though he struggles socially in terms of peer interaction. He gets some advice from a professional stand-up comedian with regard to "outing" his Autism in his comedy routine. The suggestion: "Hi, my name is Jeremy. My parents tell me I have autism. I tell them they have an attitude problem." I'm finding it interesting. I see some mild similarities to some of my DS's behaviors, particularly during the tougher, exacerbation periods, but I'm also seeing some things that look familiar among other kids in DS's peer group. The Universe giving me continuing affirmation that inflammation is wreaking havoc among the population in ways that most people don't even recognize? Or I'm just traumatized and seeing the Bogeyman everywhere!

Many moons ago, I had copied and saved down in a Word document sort of "summary posts" I found here authored by both Buster and Dr. T. as I thought they gave fairly succinct information (lists, really) of what PANDAS can look like and what its origins might be. I thought maybe they'd be quick enough reads for some of our more skeptical caregivers, without looking like an overwhelming, time-consuming request on our part. I bet they're still here somewhere . . . in Pinned Threads, maybe? But if they're not readily available, let me know and I'll copy and paste 'em back in here again!

He's in second grade, right? I agree . . . 2nd graders being held solely responsible for writing down their own homework assignments is bogus! Our DS wasn't required to utilize an assignment book until 4th grade, and even then, 4th grade was considered a "training grade" for that undertaking, so the kids had a specific time carved out every day specifically for writing the assignments down, and the teacher made the rounds, making sure the kids got what they needed noted. And yes, definitely get those provisions into the 504! In the end, you don't need MORE work, you need less, so sending home incomplete classwork to get added to homework is ludicrous for our kids. Our 504 and IEP language in this regard reads as follows: "Modify assignments for length, not content." So our DS's in-class work, quizzes, tests and homework are "sorted for the wheat from the chaff" and made shorter as a result. If he can demonstrate in 3 math problems that he understands the concepts, he's not required to do 6 just because the homework assignments are designed to "drill" kids in that one concept over and over again, for instance.

Our DS is/was a carrier. For years, he would bring letters home from school announcing that another child in his class had been identified with strep, and that we should keep an eye out for sore throat and/or fever. DS, however, never got either a sore throat or a fever. But within 7 to 10 days, either DH or I would come down with classic strep throat. We had DS swabbed a couple of times, trying to tie his OCD to strep exposure, but the cultures always came back negative, and since he didn't show any other physical signs of having contracted it, we couldn't get the pediatrician to treat him. It wasn't until after reading "Saving Sammy" that I pushed for ASO and AntiDnase B blood tests. By the time we got to that point, NONE of us in the family had had any active strep infections for more than a year, but DS's titers were five times the high end of the lab's normal range. So, yes, I do think carriers CAN have elevated titers, but I don't know if they necessarily do, especially during the period in which they are contagious in the classic sense.

Oh, I would completely agree that there HAS to be the opportunity for developing new and maybe "replacement" neural pathways, not only through childhood but well into adulthood, as well! Look at all the adult stroke victims who "relearn" walking, talking, etc., even though there's been "damage" to a part of the brain?!? For sure our kids can continue to make progress. I just wonder if it's fair to anyone . . . our kids or ourselves . . . to expect 100% in all cases? I wonder, too, if there's something more extraordinary about the parts of the brain thought to be impacted particularly by PANDAS: the caudate nucleus and the petumen. And if these two parts of the brain are where the tics and OCD are being born, is it that they're somehow more central to function and, unlike the other lobes, slower to regenerate or permit new pathways to be established? I'd love to hear a neurologist on these issues . . . brain healing, rates of healing attached to various sections of the brain, etc.

I think many pediatricians consider Augmentin a "big gun," so if they can get an infection to clear with only amoxicillin, then they want to try that first. Augmentin is amoxicillin plus clavulanic acid, and clav supposedly "soups up" the effectiveness of the amoxicillin, making it more powerful and aggressive.

I don't know . . . like Tantrums, I'd LIKE to be wrong, but . . . . . . You read or listen to Dr. Kenneth Bock, you hear that compromising the immune system even in utero, let alone from birth forward, can result in some neurological differences that can be difficult to reverse. That's one reason he's tuned his practice to educating and treating women BEFORE conception even, so that the "temple" that this life comes into and is nourished by is the healthiest environment it can be. So . . . . If what he purports is true, then entirely reversing years of both immune disorder and/or behavioral issues due to either untreated or inadequately treated PANDAS seems like a tall order. Not impossible, necessarily, but maybe more often the exception than the rule? Just on a personal level, our DS went for at least 7 years diagnosed with OCD and treated accordingly, before we found PANDAS or antibiotics. And we suspect he'd been exposed to strep and suffering on a subclinical level for even years before the OCD diagnosis. So even though he's responded remarkably to antibiotics and we support him further with supplements and ERP and an IEP at school, I'm preparing myself that he may always have some OCD . . . that his "baseline" has forever shifted. My prayers, frankly, are that he will nonetheless be functional, achieve his goals personally and professionally, and live happily . . . if quirkily . . . ever after!

Tantrums -- There are a couple of papers I give my DS's teaching team every year with regard to in-class work and homework; he, too, is very good academically, but because of his OCD behaviors, it just tends to take him longer than a "normal" kid with his level of intelligence, especially during exacerbation. Here's a link to a paper by Dr. Fred Penzel called "What the Heck is Obsessive Slowness?!" It is an awesome, concise piece! What the Heck is Obsessive Slowness There's another article that appeared in a recent OCDF Newsletter that I've copied and circulated, also; I can't find a link, but if you'd like a copy, you can PM me with an email address, and I'll gladly forward it. It's called "Obsessive Homework." I do think a meeting is in order, if for no other reason than to clear up the chain of communication between the teacher and you. I would "warm up the room" a little though, definitely, by stroking her a little right at the top of the meeting, telling her how much your DS likes her and how you credit both the first grade teacher and her with helping him achieve his academic success thus far. There are just a few areas that you need her help on, etc. . . . . "more flies with honey" sort of approach.

Thanks for sharing P. Mom! Nice voice, as well as a nice message! My DH is a musician, too! Maybe all the parent-musicians could form a band and travel the country, spreading the word. How does "Banish the PANDAS" strike you for a name for the group?

You know, very few kids asked him where he was or why he wasn't in school all day, and the ones who did ask were friends of his. He told them he was sick and doing some home-schooling until he was well enough to come back to school full time (which was true). He also told them (he was in 7th grade at the time) that his immune system was messed up, and that he was staying out of school some to reduce the likelihood that he would catch something. It seems like his few friends who inquired sort of "spread the word" among the other classmates that were curious, and everyone took it in stride. I'm sure there were a few out there who made snide remarks or jokes at DS's expense, but if so, he never heard them and his friends didn't heed them either . . . they probably defended DS. I do think, though, that boys are different from girls, especially at middle school age. From what I see of my son's friends and my friends' kids, the girls tend to be more concerned about what others think, and their social circle is sacrosanct to them; boys, from my experience, are a little less concerned in that regard and just look to their few good friends to understand and support. Smarty, you hit the nail on the head in terms of our DS's return. He began 5th period, after lunch, and added on class by class from there, until he got through to the end of the school day, leaving school right along with everyone else. Then he started tacking on class periods in the other direction, until he finally got to first period and homeroom. I will note, however, that one of the things we added to his IEP was that he was allowed to enter the school building earlier than the general masses once he was coming to school for the beginning of the day again. By letting him into the building a little early (originally through a side door that the other kids didn't use, and then eventually he just went right through the front doors), DS was able to sort of get organized and ready for the day, visit his locker before the hallways got chaotic, stop by and see a teacher if he had a question of him/her, or even spend a few minutes with his caseworker in private. Early arrival has become sort of a custom for him now, and he really likes getting a few minutes of undivided attention from one of his teachers.