MomWithOCDSon

Our DS had no issues with braces, other than the typical ones (a sore mouth for a few days); he did take ibuprofen regularly for about 3 days after they were installed, though.

Given the immune dysfunction and behavior set, has anyone ever mentioned PANDAS to you? Or have you looked into it yourself?

Typically, with most herbs, the dried, powdered variety is actually MORE potent than the fresh because it is concentrated, with all the extra parts of the original plant (stems, seed casings, etc.) removed from the mix. Never tried fresh turmeric, Smarty, but you'll have to let us know how you decide to use it!

Yes, I think his previous behaviors could quite likely be tied to his current PANDAS/PANS diagnosis. My DS's history is quite similar to yours: chronic ear infections until bilateral tube surgery at the age of three. Sensory issues, highly-sensitive and anxious preschooler and into first grade. Diagnosed with "regular OCD" at age 6 because we couldn't find a strep link at the time (he was completely classically asymptomatic -- no fever, no sore throat). Fast-forward to age 12 when his behavior took the most dramatic turn ever . . . downhill. Care team (psych, therapist, ped) attributed it to a "waxing" of his OCD, but the change was so dramatic and dysfunctional, it didn't fit. Thanks to Beth Maloney's book "Saving Sammy," we found out that even asymptomatic kids can be suffering from strep and/or the autoimmune response it inspires. Got blood tests which attested to high titers, and that set us on the PANDAS path. There's some compelling research about otitis medea (ear infections) hosting strep bacteria, and I believe that was the root of my DS's long PANDAS journey. Even after the tubes helped mitigate the ear infections, he had respiratory issues (chronic congestion, sinusitis, colds, allergies) for years leading up to the PANDAS dx. Now, after 2 years of abx and continuation of a number of supplements, his upper respiratory issues have pretty much disappeared. Good luck to you on your journey!

I would make sure to 1) take antibiotics with food, and 2) dose some good probiotics, ideally a couple of hours away from the abx dosing. Culturelle (lactobillus gg) is supposed to be impervious to abx, but you still probably stand the best chance of gaining full benefits if you stagger the probiotic and abx dosing as best you can. Florastor (or saccharomyces boulardii -- Florastor is one name brand) is a beneficial yeast which is both impervious to abx and helps crowd out bad yeast, like candida. You may have to experiment a bit with probiotics and dosages, but it can be good to mix them up a bit and use more than just a single strain. Like the others said, to the extent you can, adding one thing at a time helps you pinpoint what makes good changes and what makes more problematic ones. In our experience, though the antibiotics definitely set a few things off balance initially, as he adjusted to them, everything settled down.

Be grateful, cautious and vigilant! My DS has always been entirely asymptomatic, so without blood tests, we can't tell if he's actually contracted strep or not, but he does still tend to react (his anxiety rises) when he's been exposed. Still, the older he gets, the less dramatic his behavioral response, so I do think there's something to the maturation/achieving of balance of the immune system. Perhaps your DS has achieved it! Just keep an eye out and be cautiously optimistic, I would say! And make sure you have an adequate term of abx to address the infection!

Sometimes it doesn't matter how many credentials a person has hanging on their walls, their perspective and/or "advice" isn't worth the paper or ink those credentials required for production! Follow your gut, your instincts. And get to a different doctor. When someone comes off this opinionated (in the negative) about PANDAS in the face of a positive strep test and a classic behavior set, despite the peer-reviewed and published research from the NIMH, he's either willfully ignorant or grinding an ax. You'll be wasting your time arguing with him or trying to enlighten him. On the pinned threads of this forum, you'll find providers in your area who are equipped and willing to help you. And welcome to the forum!

LLM -- You are pretty much THE "geekiest" among us here, in my estimation (and very high esteem), though there are probably a few among us (like kimballout or dut, perhaps) who can contribute at a higher intellectual level than the likes of me! I am almost always at least 5 paces behind you on any given train of inquiry, if not 5 miles! Like Peglem, I brought up my Pfeiffer methylation/histamine chart to refresh my memory on the particulars. My DS, as you know, isn't much of a ticcer . . . it wasn't until many months after the fact and much reading and exchange on this forum that I came to realize that he ever ticked at all, and that was only at the height of his PANDAS and relatively short-lived. And by nearly every Pfeiffer criteria, he's an under-methylator: allergy-prone, OCD, perfectionistic, competitive, highly motivated, high-achiever academically, responds well to antihistamines and antidepressants (at appropriate doses), B6 and zinc. His reaction to B12 (methyl or non), meanwhile, is not good. The genetic piece of things . . . I've got nothing. Toyed with the idea of 23andme, but have been holding off due to some concern over privacy issues. Do you have the paper titled "Histamine in the Nervous System" by Haas, Sergeeva and Selbach? There's a section there about movement disorders (they reference Parkinsons rather than TS), as well as one about the immune system. Some interesting segments: - Histamine-deficient animals show elevated levels of proinflammatory cytokines, tumor necrosis factor and leptin. - Meanwhile, deficiency in different histamine receptors (H1, H2, H3 and H4) can result in very different behavioral and mood results - Beginning on Page 1186 of my copy of the study, there's a lengthy discussion of methylation, metabolism and synthesis with respect to histamine. It mentions that histamine methylation requires S-adenosyl-methionine as the methyl donor, but most of this is Greek to me, though it will certainly make more sense to you. There's some discussion of the role of GABA and histamine on Page 1193; are you dosing GABA currently? Maybe that will be of some interest. - Mice lacking histamine or H1R display "altered ambulatory activity." Looks like a treasure trove, just lying in wait for your "geekiness"!

Beerae -- I can certainly appreciate your desire to have your daughter's condition addressed by a doctor, in person; that's what we've been taught is appropriate and to be expected in this civilized world of Western Medicine. However, unfortunately, this PANDAS/PANS condition is still fighting for recognition and acceptance, so knowledgeable doctors are few and far between, and they are all stretched thin in terms of availability, as well. So those of us who've been on this road for a while have learned to adapt and "think outside the box" a bit when it comes to getting our children care. The fact of the matter is, despite what some doctors and campaigns would have you believe, first-generation antibiotic use (unlike the use of second- and third-generation abx in our food chain via animal feed and poultry and beef products directly) is not all that likely to be the source of superbug production or future resistance in your child. And when accompanied by adequate probiotics, you can help curb any tendencies toward yeast overgrowth or c-difficile. I think what's being suggested is that because your DD appears to be suffering, and her dietary health appears to be increasingly hanging in the balance, securing a prescription for her while you procure the long-term medical help you ideally want, may be critical. So whether that prescription comes from the doctor who will ultimately oversee her PANDAS/PANS care in the long-run, or if it comes from another, more temporary source, is of somewhat lesser importance than being stymied by a stinky, inadequate medical system in terms of helping her sooner, rather than later. In our case, I prevailed upon the pediatrician my son had had since the age of 2 (he was 12 at the treatment date). She didn't have any PANDAS expertise, and she was even skeptical of it as a viable diagnosis. But because she knew him, and knew us as parents, and knew that we hadn't come running to her every couple of months for the last 10 years, asking for prescriptions or whathaveyou, she was willing to give us a trial of antibiotics to see how DS would respond. Her main concern was that she didn't have any protocol for it, so I took her a copy of "Saving Sammy," opened it to the page where Beth describes the treatment protocol Sammy received from Dr. Nicolaides, and asked if she could prescribe accordingly. Her response was that she had taken an oath, first and foremost, to "do no harm," and since she didn't believe a 10-day prescription would do DS any harm, she was willing to try it. In the end, she continued to renew our prescription for nearly 2 full years after that, based upon the progress DS was displaying and the research I dug up and provided her with at every opportunity. So, while I agree that having a PANDAS specialist on your team is ideal, I also think that, with the help of the NIMH's published research, the International Obsessive Compulsive Disorder Foundation's (IOCDF) materials on PANDAS, the resources, research and links available here at ACN, and a good, caring, compassionate, and intellectually curious pediatrician, you can at least put a temporary halt on your DD's deterioration if not begin her return to health overall, now, or at least sooner than you may be able to access one of the experts. If your current ped doesn't meet that criteria, there must be another one in your area who will. Or perhaps, if you have a reasonably good history and relationship with this ped, his unwillingness to prescribe abx is more about ignorance than it is lack of compassion or concern. Many of us have put together entire binders of research and useful information to share with our peds and other caregivers so that they have access to information that may not have come their way previously; it also spares them from having to delegate their time and resources to pulling the research up in order to help that one child out of the 100+ in their practice. If you provide it to them on a silver platter, it does sometimes pave the way.

It's my understanding that the ASO indicator blood test will reveal a strep infection within the last 2 to 4 weeks, while the anti-Dnase B titers indicate a strep infection some 4 to 6 weeks in the past. Anybody want to double-check my memory or correct me? And CBT is Cognitive Behavior Therapy, used for addressing compulsive and obsessive behaviors such as your DD's eating issues. In dealing with OCD, a specific subset of CBT commonly referred to as ERP, or Exposure Response Prevention, has been found to be the most effective therapy.

FWIW, in retrospect, I suspect strep in the sinuses was part of my DS's issue, as well, and likely why he required nearly 2 solid years of antibiotics. He was always prone to upper respiratory issues, commencing with chronic ear infections beginning at about 18 months of age and continuing until we finally submitted him to ear tube surgery at 3. But even then, colds, allergies, chronic congestion, etc. were part of the picture, right up through the PANDAS diagnosis. Finally, after 2 years of abx and NAC (biofilm buster and mucus buster, along with its psych properties), he's considerably improved in that respect and doesn't have that chronic stuffy, congested feeling that he'd had in previous years. Kimballout, I know, went to the extent of having her son's sinuses scoped, and they actually found some sort of infection-harboring something (can't remember the proper terminology for it), not unlike an infected tonsil, but in the sinus cavity rather than the throat. All the best to you as you continue to root out what's behind his flare!

Oh, Smarty! How well we know how that feels! We're in suburbia, too, and there are definitely "pressures" here that don't well-suit our families. The "bummer" feeling of knowing there's a birthday party on the weekend that all his "friends" are going to, but he wasn't invited. The long school break periods (winter and spring) when he gets bored of family and wants to do something with a friend, but he can't think of anyone he's comfortable with inviting, and even if there is a kid or two he'd consider, they're more "social" than he is and so have other invitations that they prefer over DS's company. It stinks! And while I hear arrowhead's advice that life opens up after high school, we've found that life opens up dramatically the older a kid gets, regardless of when that is. Moving to middle school was scary, but put DS in an environment that was a little less restrictive, a little less "by-the-book" and a little larger, thus with more kids more "like him" with whom he found some comraderie. Then, the move to high school opened things up even further, with more kids with whom he feels some kinship, more opportunities to share kinship with like souls (Video Gaming Club, Computer Programming, Robotics Club, etc.). I do agree with LLM about some on-line community opportunities, too . . . in his younger years, DS played MineCraft, also, and now he logs into more adult sites like Tom's Hardware to trade computer tips, questions, ideas, etc. Another thought would be to look into whether or not there might be a home-schooling group or co-op in your area? We have one here that has welcomed families from all around the metropolitan area, and ours tends to consist of a lot of 2E kids and the like. The group hosts field trips, social outings, guest speakers and "master classes" for the kids, and you can participate even if your kid is enrolled in a standard school program. It's a great social outlet for these bright kids who might be just a little bit "different" from your run-of-the-mill little-Leaguer!

ibcdbwc -- You seem very well-informed, along with your good instincts, so I would say you're doing right to follow your gut. It certainly does sound as though your DS is fighting through another infection/autoimmune assault, but my own experience with a 12-yo boy in a major PANDAS exacerbation would suggest that you are still in the right ballpark. My DS had most of the same symptomology you're indicating now, and it was the result of PANDAS/PANS, not bipolar or ASD or anything else. Maybe it feels different because the developmental differences in your 7 yo versus your 12.5 yo are quite different, too, you know? He's been exposed to more of the world, more people and their viewpoints, probably more media, as well. And its put his obsessive thinking on a different track. I do have one concrete suggestion that you might discuss with your doctor/psych. At about the same age, our DS had been through about 6 mos. of abx and though dramatically better than he had been prior, he still contended with very strong obsessive thinking and anxieties. The abx wasn't able to set it all aside, even in conjunction with some very frequent and pretty "in-your-face" therapy. Until we added lamictal, an anti-seizure medication that is thought to help modulate glutamate through sodium channels in the brain. The lamictal didn't make the obsessive thoughts or OCD go away, but it did lessen the strength of their grip over DS so that he was better able to stop the "verbal diarrhea" and employ some of the tools and techniques his therapy had given him for "moving on" instead of getting all hung up over things. Personally, I think my DS (and maybe some other kids, too) get caught up in something of a "glutamate storm" because of all the inflammation, etc., and we needed some strong help to quell it sufficiently and get DS back on solid ground again. So many of the behaviors you mention smack of potential glutamate issues to me (particularly lack of memory, urinary accidents, insomnia and strong obsessions), I just wonder if it might not be part of what you're contending with, as well.

Unfortunately, puberty was difficult; again, I think the PANDAS and accompanying anxiety, married with the more standard "teenage angst" stuff about independence, justice, self-expression, etc. get kind of mixed up in a sort of toxic soup for a bit. During those times, we employed the strategies in Dr. Ross Greene's "The Explosive Child" to sit down, air our concerns, and come to compromises that helped DS feel he was able to exert some of his own control over the choices he made, and the consequences of those choices. And we used CBT/ERP for the fears and obsessive thinking that tend to set in around that time, too. As for resistance to CBT, I see many families refer to one's inability to actively participate in therapy during a flare, as well as outright resistance by some kids to employing the techniques or doing the homework even outside a flare. While I agree that a kid in the middle of a hefty flare is probably less capable of actively participating in the therapy to the degree they might otherwise, I still think setting those tools up in the household and keeping the language and coaching intact, even during a flare, is beneficial. In our experience, the truth is that CBT, especially the effective Exposure Response Prevention (ERP) is uncomfortable, no matter who you are or what your state of physical health. And most kids do rebel against it, avoid it, and/or try to disengage from it. But with persistence, and frankly, relentlessness on the part of the families and caregivers, some of it does make it through to even the most intractable patient. And it can help them come around faster and hold "truer" as the medical issues are more fully addressed. Hang in there!

After dealing with various labels and diagnoses over the years, I've come to see my son's condition as a hybrid, and perhaps that will be the same for some others, as well. It seems to me that both the research and the anecdotal evidence points to a manifested PANDAS/PANS behaviors set as a mix of trigger (infection/autoimmune) and inherent predisposition. While anxieties seem to be a thru-line, my kid manifests with almost entirely OCD, while others manifest with almost entirely tics, and others exhibit more refined and specific behaviors, such as eating disorders. In our case, the worst of the behaviors were successfully addressed through medical interventions; however, some of the behavioral tendencies (perfectionism, sensitivity to abrupt changes in schedule, etc.) have remained and appear to have become almost inseparable from who my DS has grown to be at this point in his life. While I think that some of this is perhaps due to the fact that he went some 6 years without medical intervention, labeled with "regular OCD" and treated only through therapy and psych drugs prior to finally getting PANDAS help, I also think that he likely has a genetic predisposition to some of this pattern of thinking/being anyway, and the autoimmune disorder exploited and exacerbated that. So, while I would definitely remain vigilant about very real medical triggers (infection, viruses, etc.), I think I'd also look for tools and techniques for helping your DS come to terms with some of those fears . . . learn to moderate his anxiety in the face of them and continue to function and move forward with his life.

I had made a longer post in response to your query, but in trying to insert a link, I got locked up and lost it. Aarrgghh! Anyway, in the meantime, Dedee pretty much said, and more succinctly, too, what I was attempting to say myself. Only to add that I've found a resource with some great, easy to understand, short papers on topics such as this and pretty much any and all "flavor" of OCD one might encounter along the road to healing. I've used these papers to help our family understand what's going on, as well as shared them with DS's teachers, even therapists. These are "Expert Perspectives" from the "Beyond OCD" site. Some of these papers have also been sort of comforting, in an odd way, because the commonality among the shared thoughts, experiences, ideas, fears highlighted for us and for our DS that this is a part of the behavior set . . . that these sorts of disturbing thoughts are not inherently part of one's "psyche" or the result of some heretofore undiscovered traumatic event in one's life, etc. That they are irrational thoughts/fears manifested entirely by the OCD. For whatever reason, the "Link" function doesn't seem to work for me here, so I'll just type the URL here: http://beyondocd.org/expert-perspectives Hang in there!

Personally, I don't think you run the risks of "muddying" a picture by commencing with CBT, and if the focus remains your child's overall health and functionality, then CBT is likely an important component of that when OCD behaviors are part of the picture. If his underlying medical condition is not being adequately addressed by the current antibiotic, the CBT is not going to "wipe away" all signs of that remaining autoimmune imbalance. But what it will do is help support your DS's day-to-day functioning and help give him tools to prevent the OCD from becoming a bigger and more difficult component of the illness while he proceeds with medical healing and/or you continue to seek out alternative medical interventions. In delaying the CBT, meanwhile, you run the risk of your DS permitting the OCD to become something more than a mere symptom of an autoimmune dysfunction . . . it can become more habitual and thus more difficult to set aside or quell more permanently. Dr. Storch is the finest there is in this field. I think your trust will be well-treated in his hands.

When we first started abx, we saw a dramatic improvement almost immediately . . . within 48 hours of commencing the dosing. But then things slowed down dramatically and would even, we thought, come to a stop. Initially, we thought the abx had perhaps done all they could/would for our DS, so when the prescription ran out, we didn't renew it. But then, within 8 to 10 days, we saw the return of behaviors we hadn't seen for weeks. So we'd put him back on the abx, and within 3 or 4 days, the unwanted, returned behavior would subside. We'd leave him on for a few weeks and then try to take him off again, only to repeat the same pattern. Finally, after about 4 tries at taking him off the abx, we decided to leave them in place for as long as it appeared he needed them, and as long as we could secure renewals from our ped. In the end, he was on them for nearly 2 full years, and then we weaned him off very slowly . . . over about 4 months' time. He's now been off abx for about 2 years, so it's been a total of 4 years since we officially started our PANDAS journey. And though the improvements have never been as dramatic as they were in those first 2 days, with the help of journaling, DH and I can look back and see clearly the progress he's made over that time frame. The unwanted things that he used to do which he no longer does, the good, age-appropriate things he did before the Great Exacerbation which he has returned to doing once again. So, I would suggest journaling, if you haven't begun to do that already. It really helps track the changes, however nuanced! And hang in there. Time is, in our experience, a necessary component in the healing!

Monarchcat -- Your DS's obsessions sound like a form a "scrupulosity," an obsession with doing everything perfectly, always doing the right thing, being the right kind of person. When religion is a significant force in the household, scrupulosity generally manifests as a concern with doing the "Godly" thing or facing dire consequences, but for those for whom formalized religion isn't a major part of the lexicon, scrupulosity can still come forward in other terms. Our DS had a turn with scrupulosity of his own, and it was always about being the best person, doing the right thing 100% of the time, etc. Again, I think all the avenues you're exploring (medical, methylation, maybe anti-anxiety meds to get through the tougher times) are great and appropriate ideas, but you might want to talk with a therapist, too, about some ERP for confronting the scrupulosity. A good one will have some ideas for you and your DS for pushing back at those obsessions.

Yes, there have been instances of regressive behaviors, including linguistically. Even cases of select mutism. Several children here on the forum, including my son, had behaviors that looked very much like ASD and have even been diagnosed as being "on the spectrum" during PANDAS exacerbation. As he has healed medically and psychologically, however, that behavior set has faded as well, and no one applies that diagnosis any more. As for PANDAS/PANS and "permanent" brain damage, you can run a search here on the forum and you'll find past discussions along those lines. Bottom line is, nobody knows for sure, but there's lots of anecdotal evidence to suggest that it doesn't. That being said, some behaviors that our kids develop for dealing with the higher level of anxiety frequently inspired by PANDAS episodes (OCD, tics, mutisim, etc.) can become "habitual" over time if the exacerbation(s) drag on and therapies aren't employed for helping them find other ways to cope as they heal. Rather than "brain damage," I think of that as those brain pathways being developed, just as they would with any kid, but some of the pathways our kids build during exacerbation are atypical. So as they heal, you have to encourage them and give them tools to build new pathways that are more "typical," rather than relying upon and reverting back to those paths. Does that make sense? You didn't mention how old your DD is, any other health history or what other ASD-type behaviors (besides the regressed language) you're seeing. Perhaps you'll get some more feedback from others here with similar issues or ideas.

Thanks, Dut! Can I pony on and wish you and everyone a merry holiday and Happy New Year?!

So sorry your DS is facing so much anxiety again! Yes, it sounds like maybe he needs some more medical intervention . . . perhaps a fresh exposure or hidden infection that the biaxin doesn't address? In terms of psych meds, if he's taking SAM-e currently, you'll need to be pretty careful about any SSRIs, since they essentially do the same thing. Also, traditionally SSRI's take 4 to 6 weeks to reach full effectiveness, and you can't just stop them abruptly, either. So I'm not sure that's a viable answer for what you hope is a more or less temporary situation. I know some people who've used meds such as risperadol and/or clonopin, which can quell the anxiety pretty much immediately, but these can be pretty "heavy hammers." At a low dose, risperadol didn't do anything for our DS, and at a higher dose, it put him to sleep. You might ask your doctor/therapist about a low dose of lamictal; we found it tremendously helpful with our DS, and it works more or less immediately. It didn't actually take away the OCD, but it gave him the ability to be more objective and less emotionally attached to it, so when his therapist or we would suggest (coach) him to let go or move past some obsession or ritual, he was more able to do it. He didn't melt down over the anxiety anymore. Lamictal is thought to help modulate glutamate, and that's been a benefit, as well. Hang in there!

Also, while clavulanic acid is thought to play a role in the glutamate modulation as well, they've found that a certain class of antibiotics -- beta lactams-- of which amoxicillin and augmentin are examples, have glutamate modulating properties, with or without the clavulanic component. Likely, though, that clavulanic "boost" is part of the reason this particular abx has been such a successful PANDAS intervention for some kids, Sammy Maloney and my son included!

It seems like a potential link in the chain to me. Also noteworthy is the fact that carbohydrates induce release of serotonin, as well, so it may not be just the glutamate issue in terms of carb cravings or hypoglycemia.

Children's Memorial here in Chicago is considered a premier institution for pediatric illnesses. Unfortunately, however, the head of its pediatric immunology and infectious disease department, Dr. Stanford Shulman, is a very vocal PANDAS nay-sayer. I've never heard of this institution alleging medical child abuse or getting DCFS involved, but you're so right, Nicklemama. Too many of these "premier" institutions have their collective heads stuck in the Quicksand of Ego and Reputation to employ the necessary intellectual curiosity and resolve to truly help our kids. It's a stinkin' shame.