MomWithOCDSon

Just to chime in here . . As already noted, the anecdotal evidence (and some research, as well) indicates that ongoing antibiotics may be both anti-inflammatory and helpful in meeting freshly released microbes either due to environmental exposure or the decay of biofilms currently harboring some nasties. Additionally, certain classes of antibiotics (beta-lactams, for instance, such as Augmentin) are also currently being researched for their glutamate-modulating properties, and the clavulanic acid component of Augmentin is also thought to be neuro-protective in certain respects. Since a number of mental conditions and behavior sets are now being tied to excess brain glutamate (including OCD), there's a possibility that the abx add yet another component to treatment and healing by helping modulate glutamate expression in the brain.

Also, I can't seem to find ANY probiotic blend with the histamine degrading bacteria absent at least one of the histamine producing bacteria; lactobacillus casei, in particular, appears to be pretty ubiquitous. And there don't seem to be any absolutely pure strains of anything marketed. In looking further through this guy's blog, I get a bit concerned that he might be "creating a problem," or at least making more of it, in the interest of advancing a product that features those strains he notes as beneficial versus those that are harmful (case in point, he's pitching something he calls a "Bulletproof Pack," purchasable via his site). That being said, I feel like he might have a point in terms of the American public in general. Folks not walking a PANDAS or ASD path seem to think that yogurt, acidolpholus, and/or "Pearls" are all that's needed for setting the GI tract straight. And we're collectively contributing to a massive imbalance of the gut biome as a result. But perhaps one of those blends that features a balance of a variety of the organisms ain't as bad as he's cracking it up to be? Darn it, LLM . . . another area requiring further research! ;-)

Great information . . . wish he posted some peer-reviewed studies that back him up. Okay . . . you might have to hide the box or rip the label off before sharing with spouse or kids, but this one seems to feature the "best" that he mentions, versus the "worst" . . . http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=RW-7029#.Ugq1v-Ao73g We used to use the Renew Life daily (though we relied on the Ultimate Flora 50), but most of their blends seem to feature nearly equal parts of this guy's claimed "goods" as well as claimed "bads."

Sorry, Ophelia. On top of all the other medical stuff you're going through that is exhausting, having such worrisome thoughts all day must also be quite an exhausting strain. My DS has suffered from obsessive thoughts from time to time and, honestly, these thoughts become more intrusive and more of an issue when he's not compelled to use his mind for other, more constructive purposes. As I recall, you are suffering from chronic fatigue and house- and/or bed-ridden much of the time, so that probably creates quite a "playground" for your OCD mind to go to town on! Obsessive thinking has been one of the hardest manifestations of OCD we've had to face with our DS as so many exposure exercises (ERP) fail to root it out successfully. What does finally seem to break the chain . . . the hold that these thoughts can have over him . . . is to dedicate his mind to other constructive endeavors. Even if you're physically not up to much, have you tried crosswords, Words with Friends, Sudoku, word hunts, reading, etc., even if only for brief periods? I also wonder if, given your "ability" to fixate on certain thoughts and worries, if maybe you couldn't channel that talent for "good" and take up meditation? Or even some sort of visualization exercises and affirmations to help you improve your feelings of self-worth, mental and emotional control, etc. I might suggest some books and/or workbook series by authors such as Shakti Gawain or Sonia Choquette. Each of these "spiritual" authors focus on providing you with tools to enhance your inherent skills of intuition, mindfulness, focus, etc., and the workbooks I've used from time to time include brief "thinking" exercises that put your brain to good uses, visualizing strengths, opportunities, etc. Hang in there. I'm sorry everything is such a struggle right now, but it can and will get better. You're not giving up, and that alone is commendable. You just need some more support and an ability to see a light at the end of the tunnel.

Our DS had heartburn and some reflux, not during abx that I can recall, but frequently in the months since. We discovered that he's very high in histamine, so we've been using Pepcid. Heartburn gone, reflux gone.

We've purchased quercitin at both Whole Foods and The Vitamin Shoppe. We use the SolaRay brand called "QBC Complex," which is blend of quercitin, bromelaine and Vitamin C. These are gelcaps, so you could take them apart and stir it into something cold (applesauce, yogurt), I'd think, without harming the supplement overall.

Our DS takes Zyrtec (or its generic equivalent) during the worst of allergy season, along with quercitin, and has not had a negative response to it. Also, if your child responds reasonably well to Benedryl and thus histamine appears to be the culprit, you could try something like Pepcid, as well. We've had lots of luck with that.<br /><br />Quercitin is especially great because it supposedly stops histamine production at the t-cell level, rather than just preventing its uptake at receptor sites like most conventional antihistamines. But it may take a little longer to see an impact by it as a result.<br /><br />Good luck!

I think that, since you have seen these signs of PANDAS, the first step would be to either 1) confirm it or 2) rule it out. Since your DD has autism, do you already have a DAN! doctor in your cadre of caregivers? Many DAN's are fairly PANDAS-savvy or at least PANDAS-agnostic and will walk this journey with you. Or, you can check into the pinned threads on the PANDAS forum of this site and find PANDAS doctors in your area and make an appointment with one of them. Basically, the typical, introductory testing includes an immune panel which will help identify any atypical antibody issues (ASO, anti-dnase-b, myco p), etc. The other thing I would advocate sooner rather than later is to begin some ERP (exposure response prevention) therapy for the OCD behaviors as, particularly in comorbidity with ASDs, it can nest in quite stubbornly if not met with effective, therapeutic responses. For instance, when your DD is insisting on asking repetitive questions and getting repetitive, specific answers, and you endeavor to give her those answers when and how she demands them, you are unwittingly aiding, abetting and potentially strengthening the OCD. ERP would, rather, instruct you to not participate in these question and answer sessions with her, to break the cycle, to stop "feeding" the OCD. So ERP therapy will not just help her; it will help you and the whole family learn good, therapeutic responses to these sorts of OCD episodes. Unfortunately, even if this recent behavior change is due to PANDAS, if the OCD gets a good toe-hold before you can successfully treat the PANDAS, you may have a harder time successfully eradicating the OCD behaviors after medical treatment. I speak from experience here . . . unfortunately. Good luck!

I don't know, T.Anna. I'm not personally familiar with this facility, and I don't want to just be a wet blanket, but . . . We, for a very short period, enrolled our DS in a partial outpatient program at a well-respected hospital psych program. It featured both kids who were inpatients in the adolescent psych ward, and kids from the community who came to the program from 8 a.m. to 3 p.m. When we met with the intake people, they said oh, of course they know OCD and anxiety. Yes, their program is designed to help. In other words, they said all the right things. Truth is, the program was 98% centered around kids with severe behavioral as well as psychiatric issues . . . homicidal, suicidal, cutting, drug abuse, alcohol abuse, etc. Our DS was the only kid who was wracked with anxiety to the extent that he was spooked by his own shadow. In group therapy sessions, a prevalent theme was: "Have you thought about killing yourself today? Have you thought about harming yourself today?" Great, uplifting, helpful stuff for a kid with OCD and anxiety, I can tell you. Gave his OCD ALL sorts of new issues to grab onto and recycle through his brain. DS was confronted in the bathroom by another boy in the program who'd drawn a sketch of two figures, one of which was holding a gun, and the other of which was spurting blood from his head. And the boy pointed to the figure holding the gun and said, "That's me." Then he pointed to the bloody figure and said, "And that's you." Great. They stuck him in these inappropriate and unhelpful group therapy sessions. They messed with his meds and drove him deeper into a drug-induced craze. They did not help him. Furthermore, beyond all of this stuff, I think you have a legitimate concern in terms of this program failing to highlight the treatment of OCD or even anxiety. What's more, they do not mention the primary treatment methods for treating OCD and anxiety, those being Exposure Response Prevention (ERP) and/or Acceptance Commitment Therapy (ACT). Rather, within the adolescent treatment section of the site, they say: "Adolescent treatment utilizes DBT-informed treatment (Dialectical Behavioral Therapy), including skills training in mindfulness, distress tolerance, emotion regulation, interpersonal effectiveness and relapse prevention." Sorry, but this just sounds like they're ready to deal with "problem kids" through behavioral reconditioning of some sort.' If an inpatient OCD program is what is next on the agenda, I would suggest Rogers Memorial Hospital in Oconomowoc, Wisconsin. I know there are a few other excellent and well-recognized programs in other parts of the country, and some other folks here can chime in about those. Meanwhile, if you would prefer sticking closer to home and get generally good feedback about this particular place, I would go in and interview them regarding your specific concerns and your son's specific needs. If you're not sure that you can spot a "sales job," take a level-headed friend or family member with you, someone who's a little less emotionally involved and will therefore be more likely to sniff out an "off" set of treatment promises. Good luck! May the PEX be with you!

"Infectious and noninfectious triggers in Guillain-Barre syndrome" by Benjamin R. Wakerley and Nobuhiro Yuki Good luck finding a full copy! Please let us know if you're able to locate one without spending beaucoup bucks!

Uhm . . . my apologies. I just logged into my "account" with this journal to download the whole paper, and I find my introductory free subscription period is over. Not planning on spending the $86 on the full paper at this point in time, so I guess I won't have the "full monty" to share, after all.

I believe a number of folks here have dealt with Guillian-Barre at some point. This is a summary of a paper in the latest issue of "Expert Review of Clinical Immunology." What interests me, in particular, are the notices regarding "molecular mimicry" and cross-reactive antibodies, both of which are terms many of us have heard with respect to PANDAS via Drs. Cunningham and Swedo. If anyone would like a full copy of the paper, just PM me; happy to share! GuillainBarré syndrome (GBS) is the commonest cause of acquired flaccid paralysis in the world and regarded by many as the prototype for postinfectious autoimmunity. Here the authors consider both infectious and noninfectious triggers of GBS and determine where possible what immunological mechanisms may account for this association. In approximately two-thirds of cases, an infectious trigger is reported in the weeks that lead up to disease onset, indicating that the hosts response to infection must play an important role in disease pathogenesis. The most frequently identified bacteria, Campylobacter jejuni, through a process known as molecular mimicry, has been shown to induce cross-reactive anti-ganglioside antibodies, which can lead to the development of axonal-type GBS in some patients. Whether this paradigm can be extended to other infectious organisms or vaccines remains an important area of research and has public health implications. GBS has also been reported rarely in patients with underlying systemic diseases and immunocompromised states and although the exact mechanism is yet to be established, increased susceptibility to known infectious triggers should be considered most likely.

We've been in previous years (including last), but did not go this year. Would be interested to hear anyone's experience with this year's programming . . .

Could it be that the abx, along with some of the other therapies, are "busting up" biofilms, releasing fresh "nasties" like intracellular strep, etc.? So what you're seeing is the reaction caused by a fresh onslaught of antibodies, being called out to combat the freshly liberated microbes? Has anyone with this sort of response had titers remeasured as these symptoms reappear?

Our DS had some stomach pain initially on Augmentin; he may have complained more frequently of headaches, as well, though he frequently had headaches of their own accord early in his PANDAS days. In his case, yes, his body did seem to "adjust" to the medicine, and the side effects faded over time. We did, however, add probiotics quite early on, as well, which I feel certain helped the stomach issues. We also added some bentonite clay once per week or so.

Cool! Any links, or do you have the name of the program? Thanks!

Hi Emmalilly -- Glad to hear you're doing so well! Published! Please fill us in when you get a chance! My DS16 has been taking olive leaf since he came off antibiotics about a year and a half ago; additionally, DH and I started taking it daily also, in an attempt to prevent us from bringing home strep and inadvertently exposing DS.<br /><br />Neither DH or I have experienced a belching or reflux with the olive leaf as a general rule; I can only remember one time that I became aware, after the fact, that I had recently consumed something "very herbal." ;-) DS hasn't complained about it either, and he does have a tendency toward reflux. Full disclosure, however; he's also highly histaminergic, so he takes Pepcid regularly, as well, which helps curb the reflux and may be taming that sort of response to the olive leaf, as well. I've focused on the olive leaf supplements with the highest concentration of oleuropein that I can find, since that's supposedly the "active ingredient." Recently, we've been using the Roex brand, which I get at the Vitamin Shoppe which claims to have a standardized oleuropein concentration of 17% to 23%. They're tablets of 500 mg. each, and DS takes one in the morning and one at night. The results are, I'll admit, purely anecdotal, but he did not get sick last school year at all, save one cold virus. Worth, mentioning, too, that he also takes a coconut oil (now just going with the monolaurin -- benefits of coconut oil without all the fat) supplement, which is also supposed to be naturally antibacterial. All the best to you this school year!

Thanks for the first (the second link doesn't work for me)! I am not well-versed in the herb protocols at all, but we have found some help over the years with some herbals like valerian root and olive leaf. Looking forward to reading this thoroughly and hearing others' experiences!

Cool, thanks! Had no idea kefir, unlike yogurt, contains so many strains!

I think, though, that DanActive and Kefir are primarily mediums for acidolpholus, am I correct? Acidolpholus is great if you're NOT taking antibiotics. However, if antibiotics are also in the mix, acidolpholus is vulnerable to being killed off, so other strains (sach b., lactobillus, bifodillus, etc.) are more resilient. Sach b., especially, being a "beneficial yeast," is essentially impervious to antibiotics and can actually be dosed simultaneously, if necessary.

This came up on some other thread recently, I think, and I was trying to find the paper that links urinary frequency to glutamate (NMDA) receptors. Here it is: http://www.molecularpain.com/content/8/1/20 I do think one of the leading docs (either Dr. M. or Dr. L. come to mind, for some reason) has noted this issue, as well. So, perhaps some glutamate modulating agents (melatonin, NAC) might be helpful?

Both olive leaf (or, more specifically, olepeuropein, the active ingredient) and coconut oil (or, again, the active ingredient, monolaurin) are good, "natural antibiotic" alternatives. We've had our DS on them for the last 18+ months that he's been without antibiotics and, knock on wood, I do think they help. He made it through last winter with only a single cold . . . no strep, no flu, no other significant illnesses.

My DS had never had a classic case of strep throat (sore throat, fever, etc.), either, but it turned out he did, in fact, have PANDAS. Kids can be classically asymptomatic, but if they've been exposed and their immune systems get set off, PANDAS/PANS can be the culprit nonetheless. Plus, it doesn't have to be strep; it could be viral, lyme-related, etc. Not that an autoimmune condition is necessarily/always behind tic behaviors, but I would think you would be best to rule that out definitively before you move toward other treatment protocols. I'm not sure which pediatric neurologist you're scheduled to see, but you should be aware that many are not PANDAS-savvy or even open to the possibility that infection and/or autoimmune may underlie the condition. If you are within a reasonable distance of USF, I would reach out for an appointment with Dr. Tanya Murphy first and foremost. She is well-renowned not just in Florida but nationally for her work with pediatric patients of your DD's symptomology, and she can help you determine whether or not this is PANDAS or PANS related. Below is a link about Dr. Murphy. http://health.usf.edu/medicine/pediatrics/profile.html?person_id=62247 Good luck!

I may be misinterpreting you here, but on your last statement, as someone who spent 6 years going down the SSRI path before we could find someone who would truly treat the PANDAS with abx, I have to respectfully disagree. And this is coming from someone who has witnessed (and believes in) the benefits of the proper dose of SSRI with respect to helping control anxiety and OCD. SSRIs do not "treat" PANDAS. They help modulate some of the behaviors that can result from the autoimmune condition, but they don't constitute "treatment" in the respect that "treatment" is intended to "cure" or at least promote remission of a medical condition. And, quite honestly, there's some evidence that using SSRIs might inhibit the body's inherent effectiveness at self-modulation of neurotransmitters once the autoimmune issues are successfully addressed. But if you're like us, and your child has been taking some dose for SSRI for effectively half his life at this point, removing that support is a difficult and potentially detrimental thing to do. So we soldier on, doing what works, and trying not to look back with too much regret about what we didn't know at first, what we wish we'd known before we went down the psych drug path, etc. I am not against psych drugs. I am not against SSRIs. But I also wouldn't want someone new to PANDAS/PANs to tune into this forum and see a statement regarding psych drugs being used to "treat" PANDAS/PANs as I think that's misleading. Psych drugs can "take the edge off," they can offer the kid and the whole family some period of relief from the barrage of anxiety and other behaviors resulting from the underlying medical condition. In our experience, they can even help the kid get back to "normal" psychologically and socially as they heal medically. But they truly don't "treat;" rather, they can quell, modulate, support. Sorry to be a stickler . . . tender spot for me, I guess.

So sorry for the bad experience, T.Anna. How frustrating and demoralizing! And it didn't have to be that way, which is the part that makes me angry. The doctor doesn't think your DS has an autoimmune issue or PANDAS? Fine, but then he needs to explain the criteria clearly and treat you with respect. At $600 for an appointment, he owes you that much, at least! It sounds to me as though he may be one of those doctors who responds well to being the one who sorts it all out and "discovers" the illness and the cure himself, but responds less well to engaged and involved patients who, rather than asking, "What IS this?! Can you please help me?!" are prone to saying, "We see this, this and this, we've had testing and found this and this, so now we're hoping you can help us find effective treatment." If he's not playing the god in the situation, he's not willing to "play" at all and pawns you off on Psych-Land. Truly unfortunate. I've had such high hopes for him, too, based on "Brain on Fire" and the similarities in symptomology and treatment for Susannah and some of our kids. Hang in there, follow your gut, and push hard with one or more of the very PANDAS-savvy docs. I guess it's possible they might be more prone to finding PANDAS than not, even where it's not definitive, but at least they will treat your son and you with some compassion and respect!