MomWithOCDSon

Satara -- Our DS had some of those same characteristics at that age, so I know how tough it can be. At the time, we didn't know it was PANDAS, though, and kept sort of circling around an Aspberger's classification. He'd been diagnosed with OCD, but his fixation on topics of his choice (in our case, all things computers/electronics) and his inability to read the social cues of his friends that they'd heard enough or were entirely disinterested from the start, were concerning. His teacher should be able to help guide him with some of that social appropriateness stuff, and if the educational assessment reveals these behaviors, then you would think he might qualify for some social work sessions that will help with the social side of things also. You can reinforce things at home, too; there are some great books out there about things like Aspberger's which, even though I don't consider my DS to have it nor yours either, the suggestions, techniques, etc. for helping kids "be better friends," etc. may still come in handy for you. They did for us. I know this isn't a whole lot of consolation, but try to keep in mind that, as the PANDAS treatment increases your son's health, the severity of these behaviors will likely subside, especially if you calmly and constructively reinforce the desirable behaviors now so that he doesn't settle into bad habits that the PANDAS instigates. Just plain growing up will help, too. Peglem's idea to give him a "safe place" to shelter from all the chaos when he needs to downshift is a great one; perhaps the school psychologist or social worker could offer their office or a rarely-used conference room or something?

What is it, specifically, you are trying to address while you seek the necessary medical attention? Is it that you need to protect from strep exposure, or are there behavioral/symptom issues that concern you more? Does your child present with high anxiety? Tics? OCD? If you'll give us a little more information in that regard, you may get some more specific, helpful responses. I know that some people have had success for keeping strep and other bacterium at bay with Olive Leaf and/or Oil of Oregano. For anti-inflammatory properties, it appears you've already got fish oil and ibuprofen working for you; curcumin and Vitamin D3 may also assist in that effort. For sleep issues, you might try melatonin and/or valerian root. Valerian root can help with daytime anxiety, also. We also use benedryl and other OTC allergy meds as our DS has some pretty powerful seasonal and environmental allergies, as well as eczema, and his histamine levels tend to run high as a result. We don't see any negative side effects from them, but we've also added quercitin (a natural antihistamine) to the mix so that we can cut back on the OTC meds. Hope some of that helps. Like I said, if you'll tell us a little more about what you're dealing with, we may be able to offer some more specific suggestions! Good luck!

Sorry things are a little tough right now. I have to echo DCMom and LLM . . . anti-inflammatory may take the edge off, but my guess is that the school-phobia is also going down the behavioral path now. I know you have a lot of experience and work with CBT/ERP techniques, so stick with those, hold your ground, and continue to edge your DS toward a more independent school day. In the meantime, maybe you can help him feel better and take the edge off the anxiety as you go along. We have used so many supplements for so long now, it's kind of hard for me to tease out what each brings to the mix individually. All I can tell you is that, combined anyway, they seem to be doing the trick for now (knock on wood!). Some of them are thought to have anti-inflammatory properties, and the others are thought to have glutamate-modulating properties (more specific to OCD). We use curcumin, D3, quercitin and fish oil for anti-inflammatory properties. We use NAC, B-complex, melatonin (at night) and valerian root occassionally for glutamate modulators. As you know, we also use a couple of low-dose prescription meds. I think it was mkur a few months ago who provided a paper about the glutamate-modulating properties of melatonin. We were already fans of it for its sleep properties, but we had been keeping it to a minimum (1 mg.). Then, with the onset of a new school year and anticipating some increased anxiety over it, we ramped it up slightly to 2 mg. nightly. It may be sheer coincidence, I know, but DS is doing better than just holding his own, of late, and I'm found wondering if the magical, overnight assistance of melatonin is a contributor.

This arrived in my Google alerts for PANDAS today . . . looks like some good news for PANDAS sufferers in California! Hill Park Medical Center Treats PANDAS Now if we could just clone them and drop them into communities across the country!

Hi! Yes, we've used NAC to some success. We also use B12 (supposedly "mops up" excess brain glutamate), lamictal (a mood stabilizer which is thought to help modulate glutamate), melatonin at night (modulates glutamate but induces sleep, also, so not a good one for day time), and a beta-lactam antibiotic (Augmentin), which is also thought to help modulate glutamate in the brain. Valerian root is another herbal glutamate modulator. As for the drugs like riluzole and namenda, there are some other families here (mostly on the PANDAS forum) who've used those to some success; you might try running a search for those terms on the PANDAS forum and see what you find. Our docs, however, are reluctant to prescribe . . . say they're still "experimental for OCD" and have side-effect profiles they dislike given our son's age (14). Good luck to you!

We've used Florastor, also, in the past; it is 100% s. boulardiis, high quality. We've since switched to a less expensive s. boulardiis probiotic by Nutrition Now, but I know some still swear by Florastor and seem to think there's something extra special about it that justifies the higher price tag. As for the blood draw, even though your little guy has never been through that before, do you have other signs that he's likely to freak out over it? I have to say, my DS has never been been afraid of them . . . even at 2 and 3 years old. He was more fascinated by it and liked watching his blood go through the tubing into the test tube. I think we've been lucky with lab techs, and they get the vein quickly, easily and with only a single minor prick of a very fine needle, so the pain didn't ever seem to register. Just to offer up that you may have nothing to worry about in that regard, especially if you avail yourself of some numbing cream, as suggested by mama2alex.

What a great idea! I'm a bit of a Google fanatic, but maybe it's time for this old dog to learn a new trick!

I didn't mention before, also, that UHC refuses to cover DS's Augmentin XR, even the generic variety now available; says that there's an alternative medication available (regular Augmentin or generic amoxi-clav), so they won't even pay a partial component of the XR. So that's been $233/60 tabs, even for the generic and factoring in our pharmacy's "member discount" card! When I called to complain, I asked who makes those decisions and who can I speak to about having that policy reconsidered, etc., since there is a marked difference for DS in taking the time-released variety rather than the standard variety. They wouldn't budge or put me on the phone with anyone. Rather, I was told, I could issue a written query/complaint, and it would be addressed then. BTW, FWIW, my firm is/was (I've recently changed jobs and am now covered by Aetna, effective September 1) a small business with less than 50 employees, so while I paid higher premiums to have the UHC PPO option rather than the HMO, we were still placed within this legal health insurance mumbo-jumbo purgatory that only smaller firms are subject to, apparently. Such as, the insurance company was permitted to essentially ignore the Mental Health Parity Bill and treat mental health claims (like ours for DS's therapy) separately from strictly medical health claims, requiring precertifications for every session, etc. It's a sad state of affairs.

Thanks, everyone, for cheers and well-wishes! I'm just so glad to see DS step up and manage himself, rather than feeling as though disolving into tears or anger is the only route available to him! Mostly, though, I wanted to express that he is, I think, some degree of proof that, even in the event your kid has suffered longer than some, and gone medically untreated longer than many, it's still possible for them to come back to a good, happy, healthy place. Since he's utilizing an IEP at school and we still strive hard to maintain a low-anxiety peace in the household, plus he continues to take a great array of supplements and abx, I won't claim that he's 100%. But, maybe even more importantly to me, he's handling himself as though he is nearly 100%. And that's building his confidence and self-sufficiency and spirits. It's a beautiful thing to see at last, long-awaited, and much deserved by him! All our kids deserve that, and I'm sure they're all going to get there, if they're not there already! Thanks again!

Sure, no problem! Amounts below are daily, usually divided among 2 doses (morning and evening). Vitamin D3 - 2,000 i.u. NAC - 3,000 mg. Time-released B Complex - (varies by "B," but B-12 totals 150 mcg.) Vitamin E - 800 i.u. Melatonin - 2 mg. Quercitin/Bromelain/Vitamin C - 1,500 mg./150 mg./3,750 mg. Curcumin - 1,000 mg. Fish Oil - 2,400 mg. Taurine - 500 mg.

Thinking of ordering a copy myself; the testimonials are certainly noteworthy! Students with OCD

So, DS started high school two weeks ago, and though it hasn't been an entirely smooth ride thus far, he has handled all with grace and composure and a maturity I would not have thought he could muster just a year or so ago. He is becoming, in all respects, a young man as opposed to a boy. For those of you who are more recent to the forum, a short background. DS diagnosed with OCD at age 6; we queried about PANDAS, but as DS was classically asymptomatic and few docs around here subscribe to PANDAS at all, we were waved off. At second major exacerbation at about 7.5 years of age, we asked about PANDAS again and even fought for a strep culture. But when it came back negative, we thought we'd reached the end of that road. Therapy, health, lack of exposure, low-dose SSRI . . . who knows? . . . kept DS happy and "normal" for another 4+ years until the Great Exacerbation of May 2009, approximately 4 weeks after known strep exposure. This time, there was enough literature and resources out there (thanks!) to provoke us to get blood tests, and not just settle for a throat culture. DS's ASO and AntiDnase-B were astronomically high, and we were able to coax abx out of his pediatrician. He's been mostly on abx for the last 2+ years, though we've taken him off for brief periods, reduced dosage for brief periods, etc. We've continued low-dose SSRI, added anti-inflammatory supplements and glutamate-modulating supplements, including a prescription (again, low-dose) -- lamictal. He's loving high school, and we are thrilled! He's THE freshman in his AP Computer Science class, and the upper classmen are in awe of his technical knowledge and ability. He's keeping up with his AP Biology course, and his AP Engineering class. We've had to invoke some of his IEP accommodations for his AP Geometry and AP English classes, but the teachers appear willing to work with him, and his attitude is almost eternally upbeat. He is "stepping up to the plate" in almost every conceivable way, and we are immensely proud of him. He grew more than 3 inches over the summer, so now he's as tall as me (5'7"), but his voice has yet to change, so there's a comical disconnect there. He got his braces over the summer and has adjusted well to them; I personally like the little pout they give his lips. I'm certain there are more bumps ahead. Maybe even a few bruises. But thanks to great support and his own inherent spirit, I can today envision a future in which DS will achieve his full potential and be a happy and productive adult. Thank you all so much!

Amen to that! So, officially, it's not just your opinion! It's shared . . . probably by more than you can count! Thanks!

Grace -- Sorry I don't have any actual advice to share, but boy, can I commisserate!! I just filed a complaint against United Healthcare with my state insurance board, as well as an in-house complaint with their own "Compliance" department. I had heard from some others on the forum here, many months back, that they had a lot of success with United Healthcare. So when my company switched to United from BCBS this past January, I had high hopes and moderate expectations. They managed to dash all of those in less than 8 months. It's a long story and likely of no interest to anyone else here, but suffice it to say that after having gotten precertifications for therapy treatments for DS's OCD, those folks STILL dragged and dragged and dragged their feet on processing the claims, let alone paying them. More than sixty days after they processed the claims, I'm still waiting for my reimbursement. On top of which, they've now decided that, after 18 sessions, DS should be "cured" of his OCD and they're refusing to approve any further precertifications for sessions until the therapist has been made subject to some "review board." Because everybody knows that OCD is curable within 6 months, right?!?! So our therapist must be some sort of shyster, bilking us and the insurance company out of hundreds of dollars! Yeesh! I mentioned our troubles to a friend of mine who's an HR specialist for a local company; she says that United Healthcare -- at least in our area -- has a horrific reputation of disputing most claims and delaying payment as long as possible. I wished I'd known beforehand, as I might have been in a position to sway my small company's decision in that regard. Now that I DO know, I will be steering clear in the future! Long primal scream here on behalf of you and all the rest of us confronted with troubles courtesy of our broken health insurance system!

Smarty -- You're such a wonderful mom and advocate for your boys; they are very lucky to have you! And the school is lucky to have you, too, there to support both your DS and them during the school day! I know it takes a lot out of you, though, so do what you can to rejoice in the small steps and take even just a few minutes to replenish your own spirit! And LOVE the Indigo Girls! Two of my favorites are "Galileo" and "Let It Be Me." Always worthy of a few tears and some wistful memories, those ladies! Much light coming your way!

Hi Lynn -- I'm not all that familiar with TS or tics, but I remember when we first stumbled upon PANDAS, after our DS having been diagnosed with OCD for more than 6 years, trying to wrap my brain around "PANDAS OCD" versus "regular OCD." Initially, it seemed as though the literature, the researchers and the doctors were drawing a line between the two, and that thinking was part of the reason our PANDAS diagnosis and treatment was put off for so long. I'm slowly letting go of the bitterness of that experience, but I have to admit that I still have a soft, touchy spot where this topic is concerned. Given everything that's come out more recently . . . or been "rebirthed," as it were . . . about "regular OCD" and various treatments that work for it, including antibiotic therapy (d-cycloserine), I don't know how any doctor worth his/her salt can honestly sit there and say that this condition (as well as others such as autism, bi-polar and schizophrenia) is NOT linked to inflammation in the brain and glutamatergic dysfunction. And being as we know at least ONE of those components (inflammation) and possibly both of them are also part of the PANDAS/Pitands condition, I truly do think that there's no such thing as "regular OCD" or "regular TS" or any "regular" psychological condition. I think these conditions are an unfortunate marriage of: genetics and inflammation triggers, whether those triggers be environmental (mold) or medical (Lyme, strep, myco p, etc.). So, yes, in my completely biased, non-medical, non-scientific, Momma Bear mind, I suspect that ALL OCD is PANDAS/Pitands and ALL TS is PANDAS/Pitands. And perhaps autism, bi-polar, schizophrenia, ADHD and ADD is PANDAS/Pitands, too, though I know much, much less about those conditions and have studied them considerably less, as well. I further suspect that, within a couple of generations from now, the medical community will laugh out loud at the ignorance of these times in this regard. Maybe our kids will lead the charge and be the brilliant researchers and treatment providers of Tomorrow!

Well, we've "talked" about that before, haven't we? My DS is the same way. He'll do his math perfectly, but then complain that he doesn't understand it and that even if he's done it right, if he doesn't understand how he did it, then it "doesn't count." It seems neither of you are the only ones who go on some sort of "automatic pilot" and cruise through some problem-solving without knowing how you're doing it. Seems to me that's two parts of your brain working well independently, but not talking to each other all that well, like having cognition without expression, or something like that. Maybe somehow that ties into the glutamate thing, too? Where it is, where it isn't, where it's needed, where's it's in excess? So I'm in good company, then! Love it!

Dr. K. says PANDAS kids are frequently exceptionally bright . . . especially in math. Dr. Schulman says PANDAS kids are exceptionally talented. We know here on the forum, from having run past this or similar topics a handful of times over the last couple of years, at least, that we have a lot of "gifted" and/or "twice exceptional" kids in our ranks. Begs the question, doesn't it, what's the common element? I know I sound like a broken record, but I think it's glutamate. Glutamate is released when synapses fire and neurons pass messages. Doesn't it make sense that bright people's synapses fire more often than an average person's? So isn't there the potential for more glutamate release in that intelligent population? I'm just hypothesizing based on my current area of obsession.

Interesting. Actually, DS doesn't drink any milk at all . . . never has. As an infant, he was breastfed, and as a toddler, we were always fighting ear infections. Going off the "wive's tale/folk medicine" idea that dairy could cause thickening of the mucous and make it harder for DS to expel it before it could harbor infection, he went straight from breast milk to rice milk. He drank solely vitamin-fortified rice milk until he was 4, at which point he pretty much refused any and all milk whatsoever. He does, however, partake of yogurt and some cheese. Curiously, the 2 weeks to which I was referring previously during which his anxiety, his OCD and his eczema were more or less non-existent? During much of that period he subsisted almost SOLELY on homemade yogurt smoothies (vanilla yogurt, frozen strawberries and a splash of orange juice) because he got his new braces and his teeth were too sore to chew anything. So he certainly had MORE dairy during that period than he'd had before or since. Also, this just occurred to me tonight. Didn't you mention that B12 drives histamine production? But it also "soaks up" excess brain glutamate, right? DS HAS been taking a B12 sublingual now and again (in addition to his B-complex supplement that he regularly takes) when he's feeling stressed, and returning to school has increased his anxiety. He's not taken more than a couple per day, and they're only 2,000 micrograms a piece, but maybe THAT's contributing? Nancy2

Environmental? No more than typical, I wouldn't think. I mean, his allergies are at their core environmental: mold and pollen, predominantly, though dust can be a trigger, too. We've lived in the same home for 12 years now; last year we replaced the HVAC with a new model including HEPA filtration. The summer school and this fall's school are the same building but, no, it's not new; built in the 1980s, actually. Three stories high, and his classes are almost entirely on the 3rd floor. I've been through the building many times, and there's no sign or scent of mold or dampness at all; of course, that's no guarantee. We're about 8 miles west of one of the Great Lakes, and it's been a very wet summer. So certainly, there's more mold just in the environment than might have been in previous, drier years. Our home dehumidifier sucks about 5-8 gallons of water per day out of the air these days. It's curious, for sure. I keep coming down to the only "common thread" being DS. He's a histamine machine!

Thanks for the long paper! I've only skimmed it thus far, but like some others here, I'm trying to understand what thru-line there is for our PANDAS kids and low versus high histamine. Any and all feedback appreciated! If Dr. T. feels that low brain histamine is a component in PANDAS kids, does anyone know what he thinks/knows about HIGH histamine? I've seen low histamine related to movement disorders (including tics), so is it possible that PANDAS kids with lower histamine have a higher incidence of tics while PANDAS kids with higher histamine levels are less inclined toward tics? And Nancy, I know there's a gut/brain connection for many neuro-substances like serotonin, so is your point about the foods that contain histamine similarly related? If one tends to eat histamine-heavy foods, is one's brain automatically going to have increased histamine levels? Is it possible that anxiety itself can drive histamine production, and not just be a byproduct of it? Here's why I ask these things: My DS14 seems to have extraordinarily high histamine levels, so high, in fact, that he takes an OTC allergy med (Zyrtec) almost year round, accompanied by a prescription nasal spray, plus benedryl before bed at night; without these interventions, he spends his entire day sneezing, rubbing his eyes, etc. He's also had eczema since birth, and even now, he'll develop patches from time to time -- usually on his wrists, left index finger, and crooks of his elbows. What DH and I noticed in an almost dramatic way was how these eczema patches faded to nothing -- quickly -- in the 2 weeks he had off between summer school and the regular school year starting. These were 2 very good weeks for him during which his OCD was also well under control. Meanwhile, he went back to school this week, and by the second day -- despite all the allergy meds and other supplements remaining in place -- the eczema patches are back, and he's sneezing his head off, especially in the morning while he's getting ready. I will say, he is visibly more anxious now that he's trying to settle into high school, though his OCD (knock on wood) remains in fairly good control. So what's driving what? From a layman's point of view, it seems to me his anxiety is increasing his histamine levels, rather than the other way around. Thanks for your thoughts!

Happy for you to have this as an option, but our kids are not old enough for the trial!

Given previous forum posts, papers that have been circulated, and our personal experiences, these are some of the "natural" supplements that supposedly help with anxiety and/or OCD: - inositol ("natural SSRI;" we tried but didn't seem to get any boost from it; supposed to build dose gradually, as with a typical SSRI) - NAC (amino acid; supposedly reduces glutamatergic brain activity; studies done at Yale through NIMH on use of it with OCD in both kids and and adults; at 14 and 140 lbs., our DS is adult-sized, so he now takes Yale-utilized adult dose, which is 3,000 mg. daily; we believe it has helped DS; needs to be paired with adequate Vitamin C for effective use - valerian root (herb; we use periodically at times of stress for DS, and it does seem to help calm; one gelcap per dose for him; reportedly also modulates glutamate) - Vitamin B12 (one parent here has noted that her DS actually receives Vitamin B12 injections, I think every 2 weeks; supposedly modulates glutamate and thus reduces anxiety; we've been using the sublingual tablets for our DS, again, sort of like the valerian root -- at times of stress -- it may be a placebo effect, but it does seem to help him for a short period of time) Just as a little extra note in the event you haven't come across this before . . . they are now re-investigating a somewhat dated study that certain antibiotics (namely d-cycloserine) increased the effectiveness of CBT among patients with OCD when taken something like 30 minutes to one hour before a therapy session. Dr. Storch's team at USF has actually recreated the study with kids, and they've found that there is some efficacy to this use of d-cycloserine. Scientists currently think that the antibiotic is an agonist for glutamate receptors in the brain, so glutamate is, again, part of the picture. So it seems likely that supplements which assist with either the modulation of glutamate or the "negating" of glutamate receptors is beneficial for our anxious kids. Good luck to you!

Mozart and PANDAS? Wouldn't surprise me at all. He certainly displayed emotional lability along with his genius, and he had signs of ADHD, also. My DS began group music classes (singing and guitar) at 3; he began piano at 6 and viola at 9. Unfortunately, the Great Exacerbation so consumed his time and energy (as well as DH's and mine) that he wasn't able to continue with lessons and school orchestra. He loves music, though, so it seems likely he'll get back to it one day. He's always had this uncanny ability to recognize and place any tune/song, though, even when they're just instrumentals. You know how they sometimes "recycle" orchestral music among various movies, TV show, commercials, etc.? From the time he could talk, he could tell you what the tune was and where he'd heard it before or in connection with which movie, video, etc. And he can hum anything back at you after hearing it just once. I always associated his musical ability with his math capabilities, and vice versa. Don't think PANDAS contributed; I think he always had those "pathways" available to him. And yes, he was in the gifted program at school through elementary and junior high. This is his first year at high school, and he's taking a whole string of AP courses: biology, geometry, computer science and engineering. Crossed fingers!

Mine is one of a few families here who have found some help with PANDAS OCD through low-dose SSRIs and other medications. I have to stress the LOW DOSE part of the equation, though. Dr. Murphy has documented it in a peer-reviewed paper, and we have been through the trials ourselves of starting on too high a dose, or increasing it too rapidly, or increasing it too much, etc. Unfortunately, too often, psychs just don't get all the subtleties of PANDAS, and they think that, so long as a dose is "low" by standard, non-PANDAS criteria, then it should be low enough for our kids. But usually it's not; it needs to be halved, typically, and then take it from there, slowly. I will say that we did not find Prozac to be helpful for our DS14, though, when it was originally prescribed, we did not know about PANDAS and chances are the dosage was too high. Currently, my DS takes 75 mg. of Zoloft and 100 mg. of Lamictal; of the two, I'd say the Lamictal has made the most dramatic impact on his ability to manage his OCD and emotional lability. Combined, they've made it possible for DS to participate wholly in his ERP therapy and -- knock on wood -- he's doing very well these days.