MomWithOCDSon

Though we do see OCD behaviors cycle around in terms of what's more prominent versus recessive, a sudden return of a "forgotten" behavior would make we wonder about some fresh autoimmune onslaught, for sure. Something your guests (from another part of the country?) may have brought with them, though ordinarily innocuous, because it is foreign to DD, she's reacting to it? Or even a change in the pollen/mold count, if she's at all susceptible to that? Or, it could be too that their departure (transition) is stressing her a bit, and that's translating into more behaviors. There's a paper floating around somewhere here about how stress contributes to a more permeable blood brain barrier, so in that respect, this PANDAS/PANS thing can seem like a merry-go-round that's difficult to get off. Not feeling well causes stress, stress opens the BBB, more nasties get into the brain where they don't belong, makes one feel unwell, feeling unwell increases stress . . . . . you get the picture. Stress can also contribute to higher histamine production which, in at least some cases, can help fuel stress-related behaviors (it does in my DS). I'd keep an extra eye on her for a couple of days and try to keep things low-key to the extent possible. If it is the whole BBB thing, things might settle down within 24-48 hours. Good luck!

Khodge -- So sorry you're going through this, but I can totally relate even though my vantage point is as a parent of an adolescent/teenage boy going through this stuff, rather than going through it myself. But the frustrations are very similar, and the sense of feeling let down by nearly everyone and everything you try is the same. As a mom, I made a lot of mistakes when my son was first diagnosed with OCD at the age of 6. I didn't press the PANDAS investigation when our current therapist poo-pooed it, even though my gut was telling me that there was a link with DS. When, at 7.5 years of age, we had to agree to try the first SSRI with our DS because therapy alone was not giving him sufficient leverage over the obsessions and compulsions, I again inquired of his ped, the therapist and our new psychiatrist at the time about PANDAS, but too quickly accepted their less-than-lukewarm (i.e., dismissive) responses. When DS fell off a cliff, psychologically and emotionally at the age of 12, I allowed these same "professionals" to lead us down a path of constant "tweaking" of SSRIs and other psych meds . . . change the med, change the dose, change the med, change the dose, over and over and over again. The truly odd thing to me is that they would opine SO definitively about how is was appropriate to increase doses in a relatively short ramp-up period, and/or how it was appropriate to wean DS off one SSRI in the course of a single week and put him on another one, pretty much simultaneously, yet not one of these folks was, I came to find out, taking any of these substances themselves and was instead "relying upon the literature" with respect to appropriate timing on the tweaks. I can now say definitively that the "literature" is absolute bull crap! At the time, DS was too stressed out and too overly-emotional to articulate how all this "tweaking" was making him feel, but now that he's older and healthier and more settled, and we've had another close family member go through some similar stuff but at an older, more mature age, we know that these so-called "innocuous" psychiatric substances -- these SSRIs -- can be far more impactful and tricky when it comes to tweaking and/or weaning than any of these doctors had a clue about. Horribly, horribly frustrating to realize, literally years later, what we had inadvertently subjected our DS's brain to . . . the onslaught of chemical "imbalance" and sort of "short-circuiting" that these substances contributed to! No wonder he just seemed to get worse instead of better!!! From everything you've said, it sounds to me as though you are potentially 1) especially sensitive to serotonin, and 2) possibly suffering from some other underlying issues that render the "conventional" responses to OCD meds ineffective or even possibly more harmful than good. But you are not alone! If your psych does nothing but push additional meds at you, then you need to find another psych. And I would suggest a medical (integrative) doctor, too. There is likely more here than meets the eye, and some other interventions beyond what is "standard" (aka, SSRIs) could potentially help solve this current riddle. In the end, my DS's turnaround came by virtue of the following findings: We found a strep link and convinced his ped to give him an abx trial; the results were so dramatic, she stuck with us through extended abx therapy, and he improved steadily over the next couple of years. I stopped taking the psych's word for things and started doing my own research (the forums here were a big help!). When the psych would prescribe a new SSRI and want the wean from the existing one to happen over the course of 2 weeks, with increases in the new med occurring over the following 2 weeks, I bucked him. And we slowed that schedule WAY down, as well as halving all the doses prescribed because we now knew that the "standard" dose was likely too much for DS. We found supplements that supported DS as he healed and gained more control over his OCD: NAC, B6 and zinc, along with an antihistamine, were key for him. We changed therapists . . . twice . . . until we found someone with whom DS truly connected and with whom he would engage enough in the ERP and homework exercises so that he could continue to gain ground. We also, eventually, changed psychs to someone who was more open-minded, more up-to-date with respect to ongoing research in the field, and who wasn't as dismissive with our attempts to keep current with the research and OCD treatments as the previous psych (i.e., less egotistical, generally). I'm not sure where you live and what your options are for seeking out more effective help, but please don't give up! You are young and have a lot of opportunities and joys yet to come! This forum and others like it are here for you and can help you network to some more effective treatments and a better outcome. Hang in there!

Very interesting. I heard on NPR just this morning that a billionaire has donated some $650 million to MIT and Harvard so that they can conduct research on genetics and mental illness. http://www.npr.org/2014/07/22/333892150/sons-mental-illness-prompts-billionaires-big-donation-to-psychiatric-research Frankly, anything that moves us beyond the old saws that say "we don't know what causes it, we can't cure it, but we can medicate/control it," I am all for!

Ladymavs -- Yes, unfortunately, it sounds all too familiar. We went through very similar obsessions and issues with our DS at around the same age, so I have to agree with you that hormones are most certainly part of the mix, at least insomuch as the nature of the obsessions are concerned (sexual and scrupulosity in nature). I would stick with the abx and supplement protocol and, by all means, dig into the CBT (hopefully, the therapist is well-trained in a specific subset of CBT, that being Exposure Response Prevention, or ERP, therapy) and do what you can to support your DS in the therapy exercises and homework while avoiding aiding and abetting the OCD obsessions. It can be tricky. With respect to the SSRI (Prozac), in our experience, yes, you've been instructed to increase the dosage too quickly. A common and standard error among many, many psychs, unfortunately. I would step it back down and ride with the lower dose for at least a couple more weeks and see how your DS responds. Then, if you decide to try an increase, I would see about maybe halving that increase to only 5 mg., rather than fully doubling the dosage. And then hold that for at least a couple of weeks before making any other increases, though you could step back down if your DS appears to be negatively impacted ("activated") by the increased dose. In our experience, within 48 hours of stepping a dose back down, the activation behaviors will ease off. Hang in there and try to trust your instincts and your depth of knowledge about your son, even in the face of "professionals" who may consistently suggest that you're somehow less in tune with your own son and his needs than they are. Our experience indicates that there are, indeed, better days ahead!

Well said, Airial. We haven't been to Rogers, either, but we did -- in his darkest days -- enroll DS in a partial outpatient program at a local hospital psych unit; it came highly recommended by our psych at the time and is a well-regarded medical institution. But we had an experience similar to Starbucksmom. Never mind PANDAS which, when we initially enrolled him, we hadn't a clue was part of the picture. The trouble was with the staff, the miscommunication among all the participants, from the intake personnel to the psych fellow to the head psych to the "teacher" they supposedly had on staff to help the kids stay current with school work, even though they were attending the program (on an outpatient basis) all day, 5 days per week. We eventually came to the conclusion that we had been "sold." That they obtained pre-approval from our insurance company for DS's enrollment, and that was all they needed in order to "shoehorn" him into their "program" which was never, ever right for him. And the rate at which they "adjusted" his meds . . . both in terms of actual substances and dosages . . . was appalling. As a result, I remain wary of all of these "programs," however well established. In the end, the program can only be as good as its staffing, and just because a Dr. Storch may be at the top rung of the ladder (whom I adore, by the way), that doesn't necessarily translate all the way down to our kids' direct caregivers, especially on an inpatient basis during which you have nominal interaction with your own kid so that you can truly assess how they're responding to the treatment/techniques they're being offered.

To be perfectly honest, no, mine is not. But I think there are many components that likely contribute to that. He appears to have suffered from PANDAS for at least 6 years, and likely longer, before we found someone who would actually grant or accept a PANDAS diagnosis, let alone treat it. So during some key developmental periods, his brain was being wired to "compensate" for that autoimmune onslaught . . . to suppress his anxiety, to find "work-arounds" for his OCD obsessions and compulsions. Undoing that wiring in its entirety is a tall order, and he's a tough customer. But the rest of our story is this: he went from being an entirely nonfunctional kid to a highly functioning one. He is happy. He's engaged, funny, witty, strong, compassionate and focused. He still contends with some anxiety, especially situationally, and he can lapse into OCD behaviors as he attempts to compensate for that anxiety. But he is, as we've been taught to coach him, "handling it." And generally handling it well. Many in the PANDAS/PANS community are after that "100%" or "back to baseline," and I applaud and celebrate every family that's found their way back to that pre-PANDAS point. But in the interest of being fair to those among us for whom that may not be entirely realistic (particularly in the short-term, though I, too, will continue to hope for 100% myself, one day), I just want to say that life is, nonetheless, rich, joyful and limitless. As is my DS's potential. Most people have some "Achilles heel" as they make their way through the world, and this "residual" OCD/anxiety is currently his. But we like to think that doesn't make him "less than;" rather, it contributes to him being "more than:" more compassionate, more kind, more accepting, more grateful.

Unfortunately, only members have access to the full story, but for those of you who pick up The New Yorker on the newsstand now and again, this might be of interest. I have yet to read the full story myself, but as soon as DH is done with his copy, he'll pass it on to me. http://www.newyorker.com/reporting/2014/07/21/140721fa_fact_mnookin

We're going to be facing a similar situation ourselves soon, so I'll be interested to hear which way you go here. So glad to hear he's doing so well and ready for the college experience! I like the idea of pulling titers; that way, if he's still producing varicella antibodies, you can get a note attesting to that definitively and know that he's still protected. If, however, he's not still "immune" to chicken pox, I guess then there are a few things to consider. I mean, getting chicken pox at an older age isn't something to mess with, as I understand it, so I don't know if I'd be able to do the "benefit/cost" analysis and determine absolutely, in the absence of other considerations, that I'd go for exempting him immediately. The things I think I'll be taking into consideration a year from now, when we're in a similar position, are the following: How's he been doing, immunologically, in the last 12+ months? Does his immune system appear to have "matured," i.e., is he having more typical responses to immune triggers? (This is what we've seen in our DS of late. Where he used to be hyper-immune and so rarely caught a cold or anything else, but his allergies were essentially a year-round thing, he now responds more "typically" in those regards: catches colds when they're going around, displays allergy symptoms when the pollen or mold count is high, but not 24-7, etc.) Is he generally healthy? If vaccinations are about putting an extra "load" on the immune system, then you don't want to "top out a glass" that's already edging toward being over full. On the other hand, if his immune system is not being taxed by other issues at present, a single vaccine (not a "bunched" one like MMR) might not cause harm at this age/at this time? If you decide to revaccinate, can you do it soon enough that, should he have a PANDAS/PANs response on any level, he'll still be at home with you so that you can help him through the "blip"? Does he have tools and resources at his disposal if he should have an adverse reaction to the vaccine if you were to go ahead with it? (CBT, ERP, supplements, calming strategies, etc.) So much of what I hear and read these days from folks like Dr. Bock is that it's not the immunization itself that is "bad" . . . that rather it is the timing and magnitude of the vaccination. That bombarding our young childrens' immune systems with multiple vaccines, within a fairly compressed time frame, is part of what has contributed to a lot of the challenges they face, particularly if they are genetically predisposed. So approaching immunizations in a smart, timely way is key: to avoid bunching, multiples and immunizations at points in time at which the immune system is already being challenged by other factors. I'll be thinking of you, Joan, and wishing you and your DS the best! Let us know which way you go and how it all goes!

There are many, many strains of probiotics; acidolpholus is one that is more common and can be found in many food sources, as well as supplements: yogurt, kefir. The upside of acidolpholus is that it is readily available and generally inexpensive. The downside is that this organism is readily killed off by antibiotics, so if you're consuming abx, this is not a great probiotic for you. Meanwhile, sach b (a beneficial yeast) is impervious to antibiotics, so you can take it simultaneously. A number of other probiotic strains can also hold their own against abx, including lactobacillus gg (commonly packaged as Culturelle). Unfortunately, those guys at the Vitamin Shoppe, while well-intentioned, don't always know as much as they think they do!

I don't know about dopamine specifically, but the trouble is also that some of the supplements you've mentioned also serve to increase levels of other neurotransmitters, etc. in the body, so for some of us, high dopamine may not be an issue but a supplement can still raise issues. For instance, B12 increases histamine levels, so it was not helpful for my DS, whose histamine levels tend to run high naturally. The balancing act continues . . .

We have used Pepcid off and on and have found it to be a very effective H2 blocker (histamine receptor); for our DS, it has helped with seasonal allergies (mold and pollen), eczema and the very abrupt form of "flash anxiety" -- sort of exaggerated "fight or flight" episodes. If you've searched Pepcid threads here, however, you'll find some warnings about use (or perhaps more accurately, overuse) reducing stomach acid to too high a degree, thereby altering gut flora in a way you wouldn't want to do. However, I stand by its efficacy during high-histamine periods, and we've not experienced any of the negative side effects; we continue to supplement with probiotics, however. I would start with the regular strength (10 mg.) formula, once per day, and see if he seems to benefit. If he does, but seems to need more antihistamine help, you could use it twice a day during the worst of allergy season. Given your son's size and weight, I would probably steer clear of the "maximum strength" stuff (20 mg.) unless you can run it past a doctor and get their input on that. Good luck!

My son has OCD which was birthed by, and continues to be exacerbated from time to time by, an auto-immune condition, so I can relate to your predicament in three substantive ways: 1) OCD thoughts/worries can be very intrusive and "outsized"; 2) dealing with auto-immune concerns, I am very wary of these vaccines that get promoted as though they're no big deal and "everybody" should get them; and 3) we frequently disagree with our son's caregivers (be it the pediatrician or the therapist or the psychiatrist), so I know how it can be unsettling and cause you to question your own convictions when one of these "professionals" voices a strongly oppositional position. So, here's what I want to say: Please don't give up on therapy. I can appreciate that this person, on this particular topic, has "rubbed you the wrong way," but if he/she has been helpful to you previously in contending with your OCD, then there's a bigger picture here to consider. But this is YOUR therapy, so you can be active, rather than passive, in it, and fight to avoid feeling "lesser than" just because this person has a different degree plaque hanging on their wall. We've found that sometimes we have to just move past the "bad" in order to embrace the "good" and constructive in our caregiver relationships. So the flu vaccine issue aside, if this therapist is helpful to you in your fight against OCD, I would stick with it. If, in addition to this disagreement, you feel "stalled out" or otherwise less assisted by therapy with this particular practitioner, then I would seek out someone else. We've found that, sometimes, the fit just isn't right, or that our son's evolution in terms of growth and maturity results in a need to move on to someone else from time to time. As for the flu vaccine, I'm sure as you've looked into it, you've found that there's probably as much support in the world for your decision to remain UNvaccinated as there is for vaccination. On top of which, most psychs will tell you that OCD is impacted, generally, by assaults on the immune system, even if you are not one of those people identified with a specific auto-immune condition. So unnecessarily introducing a virus can be a little bit of Russian roulette, and if you're otherwise healthy, I think your gut instinct is something you should heed. There's a reason they call OCD "The Doubting Disease," eh? But just because it can make you more sensitive or even prone to over-reacting when your judgment on some topic is called into question, don't lose sight of the core of who you are! You sound like an intelligent, thoughtful, resourceful person. So with or without OCD, you can certainly think for yourself! And NO doctor is EVER ALWAYS right! That's why they call it "practicing" medicine . . . 'cause they're "practicing" on us 'til they get it right! Hang in there!

I will double-down on Ross Greene's "The Explosive Child" as, particularly with a kid your son's age, I think the techniques will work well. For my DS (12-14 at his worst PANDAS behaviors), the techniques in the book appealed to his desire to have some control over the situations, and to his need to feel as though he was being heard out, rather than just steamrolled or cajoled or bribed into compliance. And thanks for the "social thinking" train of thought, Smarty! Haven't heard that specific term previously, but I think it will appeal to my family in a big way!

Yep. Here's a WikiHow on it: http://www.wikihow.com/Whiten-Teeth-With-Hydrogen-Peroxide

My DS took n-acetylcysteine (NAC) for several years, and it has been discovered to be a biofilm dissolver. It's also a glutamate modulator. There are some kids who do not do well on NAC . . . have some negative behavioral reactions. While there are others, like my DS, for whom the response was only positive. It might be something to look into. If you decide to try it, I would start out with a small dose and build the dose gradually.

Congratulations! You can make a paste with hydrogen peroxide and baking soda; brush his teeth with it (no swallowing, obviously). Works like a charm!

I always learn something new from you, LLM! I have always been left with a metallic taste in my mouth after sucking on one of those zinc+C lozenges during cold season, and I always just assumed everyone tasted that because of the zinc in the lozenge! But now I can use that as a test with my DS. Thanks!

Thanks LLM!

I have heard that this is the case, but I haven't read any studies that I can refer you to. I'll also offer that we've begun using almond milk, and the whole house loves it. Ton of calcium, but none of the lactose or casein. DS was raised on rice milk because we thought he might be lactose intolerant due to persistent reflux, but he lost his taste for that somewhere along the line. With the almond milk, however, his acceptance of cereal for breakfast, etc. is back.

I'll double-down on Nickelmamma's response. My DS still takes lamictal, though not specifically for rages. His psych prescribed it for its glutamate modulating properties, along with the fact that it gives him a more objective perspective on some OCD behaviors . . . he's less emotionally "bound" to the OCD, so he's better able to push back at it and, ultimately, past it.

Unfortunately, this story was VERY superficial though, as dcmom justly pointed out, it is, I think, helping to "demystify" and destigmatize OCD to those mass audiences who favor these "news" shows. But no, there was almost nothing . . . other than recording portions of a handful of therapy sessions . . . that went further into the causes and/or treatments of the OCD. Thankfully, these kids generally seem to have pulled through the worst of their experiences thus far with grace and health and some "normalcy" in life, but the viewer got no real information as to how that all came about. Therapy? Psych meds? Miraculous "auto-improvement" (i.e., truly PANDAs or PANs, with the episode fading as the infectious trigger is dealt with)? That's one of the reasons I was hoping to find a new paper by Rosenberg. His earlier research on the role of glutamate in OCD DID, in fact, suggest some viable treatment possibilities by way of glutamate modulators, including a certain class of antibiotics (beta lactams) and NAC. So while he is a researcher and not a treating physician, I think he might still likely have some things to say that could be useful to our community. After I read his previous papers regarding glutamate and OCD, and the concentrations of glutamate in the caudate and putamen -- which corresponded with Swedo's findings with regard to the enlarged caudate and putamen -- I reached out to Rosenberg and Swedo both about the similarity in the findings and whether or not the glutamate might be the source of the inflammation that Swedo was seeing. Swedo's research partner at the time, Dr. Michael Grant, responded to me, as did Dr. Rosenberg, saying that it was an interesting observation and one that could be investigated further, but neither acknowledged that they would be doing so. In fact, Rosenberg told me that he was moving on . . . to studying the role of heredity in OCD and the production of brain glutamate. I'm assuming this latest finding of his announced on 20/20 was a finding that came via that undertaking. I'll let you know if I'm able to find out anything further.

Most of that show, unfortunately, was just a regurgitation of a broadcast they did a few years ago, though they did dedicate a few minutes toward the end of the program "catching up" with those kids they featured, where/how they're doing now, etc. They never mention any kind of PANDAs/PANs connection to the OCD, let alone investigate it. When the program first aired, I posted an email to 20/20 via ABC and told them about PANDAs and suggested they investigate it. Never heard a word back. Interestingly, the research doctor they interviewed, Rosenberg, was interviewed for the original story, also. And both times, he had the results of brain scans (I think they're SPECT scans), and I think he's accessing them via coordination with Dr. Chunagi, who has done some scans of some PANDAS kids here on the forum. In the original story, Rosenberg commented on how he found unusual concentrations of glutamate (neurotransmitter) in the caudate nucleus of the kids with OCD as compared to "normal" kids. Which pricked my interest because Swedo, in a number of her presentations, provides a brain scan of one of her early patients for whom, prior to PEX treatment, the caudate nucleus was "inflamed" or larger than normal. The "new" research finding that the teasers trumpet have to do with Rosenberg's more recent findings that the type of OCD (say, contamination versus "just right" OCD) can be identified by WHERE in the brain the atypical concentrations of glutamate are found. But the story didn't go into any greater detail, except to say that Rosenberg had just delivered these results in a presentation in New York the preceding week. I Googled and tried to find a new paper by Rosenberg, but didn't come up with anything. The story also didn't really go into any depth regarding the treatment(s) these kids have successfully received.

DS17 is 5'10" and 180 lbs., so full-sized adult in that respect. Ours is from Bluebird, as well, and the bottle suggests 15 drops in the mouth, held for a full minute to allow absorption, and then swallow. We used that dose (just one time each day) the first couple of times we did it, and then DS began to object to the taste. So I bought some gel caps and thinking that, since hearing (never tried it personally) that ingesting pot creates a stronger effect than does smoking it, I put only 10 drops in the gelcap that he took. I'm thinking if we go with a gelcap again, though, I'll take it back up to the total 15 drops, given as DS reported not really feeling anything significant from the 10-drop gelcap dosage. Just a heads-up, too. I'm not sure if it was the type/brand of gelcap that I bought (SolaRay), but I tried preparing a few in advance and keeping them in Tupperware in the fridge; would not recommend that, as they appeared to leak quite a bit of the oil, so it sort of blew the whole idea of containing the oil and its taste, plus it was a waste of some expensive product. Now we make them "to order," so to speak, right as they're going to be consumed! Good luck! I'll be interested to hear your experience!

After reading various accounts of it, yes, we actually tried it. Thought it might "take the edge" off of some ramped up anxiety and OCD our DS17 was experiencing over ACTs, AP tests, etc. Our results were inconclusive though, unlike some others, we've not made the CBD oil part of a daily regimen. The first time we used it, he reported improved focus while working on a paper. The second and third times we administered it, DS was less certain of any palpable impact. He did appear to us, however, to have improved focus as his progress on his schoolwork that day was smoother and more efficient. In terms of OCD behavior changes, however, I can't attest to it in any dramatic way, though again, a part of me wonders what changes might manifest were it to be part of a daily regimen. Particularly during high-anxiety periods, DS tends to revert back to some contamination OCD, and we did not see any reduction in those tendencies during the CBD oil use, sorry to say. Had we, we probably would have been more insistent about trying it on a daily basis for a period.

Great news, Kimballout! Kudos to you and your DS for all the hard work, resiliency and determination. You guys rock!