thenmama

My kiddos tend to fall into the same throat clearing camp Nancy (MomWithOCDSon) posted about above-- they'll be doing it constantly but I'll notice it will stop for a little while here and there, or sometimes go away for hours then return to constant again. This is my clue that it is tic vs. drip. And as Nancy mentioned, my kiddos can be prompted to shift to something else-- or unbeknownst to them I'll get them doing something else to test it and if the throat clearing stops when I do, I'll know what's what. When they have legit throat/drip issues we treat whatever it is that's causing those appropriately. But usually those don't come in isolation-- I'll know they're experiencing allergies, asthma, or a cold from other signs and symptoms, as well. We find hot or warm honey lemon water helps when something is irritating the throat and causing the clearing or a cough, as does just a little spoon of straight-up buckwheat honey. HTH

Wondering if anyone's child has started thumb sucking in a flare? Ds, 7, just started sucking his for the first time ever and it's quickly progressed to constant sucking.

Good old Batavian and Mechtler at it again... new article: Batavian If this wasn't such a serious matter, involving real kids' lives, Mechtler's media peacock dance would be laughable. Owens, the "journalist," seems like he just doesn't have the capacity to understand what he's reporting on and is under Mechtler's spell (do they practice hypnotism at Dent, too?). So while this is totally irresponsible (ahem) reporting, I find his offenses less egregious than Mechtler's. In this, Mechtler takes more pot shots at Dr T, with statements such as: "Dr. Laszlo Mastler, medical director of the Neuro-oncology Department at the Dent Neurological Institute, said he knows of no definition in medical literature of "PANDAS-like" illness. He said it would be up to Trifilletti to share his diagnosis with the medical community if he's discovered a new illness. "He should publish his findings in a medical journal, which would mean a formal review to be accepted, with strict academic and scientific proof," Mechtler said. BTW the term "academic proof" is pretty meaningless-- academic publications would refer to and require the same type of info/evidence/support that'd be contained in anything that is counted as "scientific proof," and it'd be the same set of publications, anyway. And if there was the former category of proof without the latter, it'd be pretty worthless because it'd just mean someone, in an academic context, put forth some theories/ideas. So these are not really two distinct categories-- it's just Mechtler 's same old semantic sh--, trying to make himself/his dx appear more valid and credentialed in order to seem superior and intimidate. And yet, when it comes to his dx, apparently scientific proof of the disorder's existence is irrelevant. It is, after all, a disorder proven by an absence of proof--that is, it is proven to exist and is diagnosed based on the lack of evidence that it is something that's proven to exist and can be given as a diagnosis. CD is basically a "we don't know what the $#!@ is going on here so we'll just say it's an emotional, hysterical female thing" sorta medical diagnosis... And when it comes to self-appointed demi-god Mechtler, he has no need for other objective evidence, like labs, or even following the standards w/in his own field for dx'ing CD (that all else be ruled out- looking for organic illness and finding no evidence of (a known) one is, after all, CD's "formally reviewed academic and scientific proof"). "Neurologists at Dent have diagnosed 15 patients from Le Roy with conversion disorder, and concluded the situation in Le Roy is a rare case of conversion disorder spreading as mass psychogenic illness. MPI, according to Trifilletti, is a diagnosis that 'can never be supported or refuted by objective findings.' Mechtler disagrees with the assertion. 'Conversion disorder can be diagnosed based on an examination,' Mechtler said. 'This is something I've tried to explain to the media early on. It is not a diagnosis of exclusion. Any neurologist can pick it up on an examination.' Hysterical blindness, Mechtler said, is an example of a conversion disorder that a doctor can detect on a first office visit.' " Umm... that's actually not what the "scientific" research and literature that I've found seem to say about it, dude. As far as academic mojo goes, I'm thinking Mechtler must've bombed lit/humanities-- b/c he's obviously not seeing the hubris thing here. Ah, but I do enjoy a good downfall... PS: One of our own has delivered a few nice counters in the comments on that article. Way to go, D!

We're local so I first saw news of this tragedy yesterday. He had invasive strep-- meaning it was not just typical strep throat with a nastier strep bug-- his GABHS infection was in, or spread to, other places in the body-- like blood, brain, lungs, tissue, etc. And yes, Nickelmama, it seems one way it can become invasive is if there are open cuts. I found a bit of info re: invasive strep on the NY State Health site: Strep fact sheet The county this little boy lived in borders Richmond (City) and we apparently do have a more resistant strain of strep around here. Not sure, though, whether that contributed to this sad event-- since it sounds like this can happen with typical GABHS strains, too. It's terrifying stuff!

I'm on Biaxin (clarithromycin) for MycoP right now. But there are others here with more MycoP experience-- so I'd see what they have to share...

Here, I'd just posted this to another thread yesterday re: which labs we've had.... Quantitative Immunoglobulins, A, E, G, M IgG Subclasses 1-4 S.Pneumoniae titers- 14 serotype Haemophilus Influenzae IgG MycoP IgG and IgM H. Plyori IgG, IgM, IgA Anti-DNase B ASO CBC w/ Diff Platelet Comp Metabolic Panel GGT Sedimentation Rate- Westergren Urinalysis C Reactive Protein and a Thyroid Panel In addition, they've had Lyme testing, Vit B12, Vit D, Diptheria AntiToxoid, Tetanus Antitoxoid, EBV, and ds's immuno has ordered other labs, incl: lymphocyte enumeration panel, and Heme18

I can't think of an article right off the top of my head-- but you should tell him it is considered standard of care by top PANDAS docs-- our PANDAS doc runs them, our ped rheumy runs them, and I know Dr T and Dr B run them, as well. Wish I had more-- hope someone else does. If you need the set they run lmk

I just asked my dd how it felt for her when she had her migraine after IVIG (she also was vomiting/nauseous). She said it was much much worse whenever she stood up or even moved. I'm sure her recollection is accurate because it was a debilitating migraine as it was-- she couldn't handle light, sound, it was painful just being still in bed, and she complained at that time that she couldn't move because it hurt too much and it was terribly painful when she had to get up to vomit. Our regular doc had us give ibuprofen right when we called, which maybe helped a bit, and then the rheumy got the message, called us right back, and had us dose her with prednisone. We also gave her anti-nausea meds. Once she took the prednisone, things improved pretty quickly and dramatically. Don't remember if we gave her Benadryl after the fact-- know we gave it prior. So sorry for your dd-- hope she feels better soon! We're thinking of you both... TH

We just had a lab appointment yesterday at Labcorp to get new baseline numbers for the kids, and they seem to have a new policy of informing you in advance what the total costs would be if your insurer doesn't cover it (not sure if this is a new nat'l policy or just around here b/c of a recent issue about this that has been in the local media). If not covered, the total cost would have been about $2,200-$2,700 (ds had more tests drawn than dd). But, pretty sure that was without the insurance discount. Anyway, yesterday our kids were drawn for: Quantitative Immunoglobulins, A, E, G, M IgG Subclasses 1-4 S.Pneumoniae titers- 14 serotype Haemophilus Influenzae IgG MycoP IgG and IgM H. Plyori IgG, IgM, IgA Anti-DNase B ASO CBC w/ Diff Platelet Comp Metabolic Panel GGT Sedimentation Rate- Westergren Urinalysis I know I'm missing one or two because the total doesn't match what was entered at the lab yesterday, but I don't have the lab orders anymore. My dd had 14 in her original order + 2 they wrote in a couple after the fact. Ds had 14 or 15, plus four additional written in for allergy issues. It may have been C Reactive Protein and a Thyroid Panel, since that's been included in most other sets of labs they've had run. In addition, they've had Lyme testing, Vit B12, Vit D, Diptheria AntiToxoid, Tetanus Antitoxoid, EBV, and ds's immuno has ordered other labs, incl: lymphocyte enumeration panel, and Heme18 Anyway, not sure what Dr T usually orders, and obviously these are specific to my kids and where they are presently in their illness/treatment-- but thought it's at least give you something to go on. HTH

nevergiveup-- I think you misunderstand me. If you see my post on the first page of this discussion thread you'll notice that I'm not naive regarding the white paper and its goals, and I am looking at it objectively, not emotionally. I'm responding, not reacting. I'm well aware of the paper's intended purpose, and professionally, I'm a writer and academic so I'm pretty well versed in things like context, tone, audience, the conventions of publishing, etc. -- as well as the way politics operate in any given field. My professional work also involves social change/activism, so I may analyze and critique things through those lenses when they are intended to effect change in the mainstream. Anything that involves people is, by nature, political, so I think many of us expected politics to be involved in this. And I think many of us actually can imagine the extent to which politics are involved-- speaking for myself, I know I can. So, just to clarify, my critique of the paper is not because my feelings are hurt by Swedo's tone (which I was trying to point out was appropriate for the paper, but may have been better if accompanied by a more personal, encouraging note to the PANDAS community if she really wanted to maintain its support), nor am I upset because my own children are excluded by the new criteria (they're not), nor is it because I'm just not capable of understanding the nature of what's involved here and the politics that surround it. I am not, as you seem to assume, left wanting more from this white paper because I wasn't aware as you were that politics might be involved in funded research, medicine, and government agencies. I just don't think it was a very good paper or strategically smart, at least not on the visible plane. Sure, she took TS out of the equation-- but in doing so she also sent the TS camp the message "You win." That could very well backfire down the road-- they may step out of the way for now, but if her work starts to encroach on theirs again they'll just use her own publication against her. Based on the record and what I've seen, I'm just not convinced that Swedo's politically savvy--but I hope she'll prove me wrong. I guess I'm not convinced by your defense of the paper, either. Can you explain how treating with SSRIs and anti-dop drugs is "supportive of public policy" and how antibiotics had to be excluded because of public policy (and which public policies those are)? I also question if as you suggest, Swedo only wrote this paper because parents were expressing to her how difficult it was to get care, in what part of the paper did she address that and what was it in the paper that was intended to make that easier? Your rationale and claims don't seem to be supported by, and may even conflict with, the paper itself (including the paper's raison d'etre). I can see you feel strongly about this and really believe in it, but when it comes to addressing the actual content or substance of it, you're equivocating-- I think maybe because you are so invested in your position and would like others to see it as you do. I was bothered by your post in response to mine because I thought it wasn't necessary or appropriate for you to suggest that because my take on this differs from yours I must not understand it. But, I really don't think you intended your post to be condescending. I believe you were trying to be positive and supportive, and were trying to rally others who may not be feeling the Swedo love right now to remain hopeful for our children. But you know, we don't have to agree in order to do that. I always welcome challenges to my opinions and what I write--it spurs me to consider differing viewpoints and is an opportunity for growth. I think dissenting opinions, respectful disagreement, and thoughtful debate are healthy and necessary in a community. I see no reason why disagreeing would preclude us from playing on the same team when it comes to advocacy and support for those affected by PANDAS. Let's just agree to disagree and foster mutual respect within this amazing community of ours as we forge ahead with the shared purpose of helping our children and others like them.

Have you read the white paper? Tics are no longer a significant part of the criteria (they fall into the nebulous "motor" category in the buffet menu of "other symptoms" from which patients need to have symptoms in 2 of 7 categories). Those who tic but don't show signs of OCD are automatically excluded from the diagnosis. And the only treatment she suggests, beyond the usual short term abx treatment for acute infections are antidepressant and anti-dopamine drugs. I honestly don't think this paper will make the headway for PANS they expect it to make in the mainstream med community. On analysis, It doesn't really say/prove anything new-- it just regurgitates a portion of what was already there (and is a pretty transparent political gambit). IMHO, it makes Swedo and her case for PANS look weaker-- like she's backpedaling and admitting that maybe she really didn't have a very strong case to begin with and is now clinging to the few pieces that haven't already been shot down or heavily contested. (not saying I believe this-- just thinking about perceptions) The things I think this paper are most likely to accomplish are: making it harder for kids to get diagnosed, less likely that docs will Rx treatments other than short term abx and psych/anti-dop drugs, and less likely insurance will cover anything else. So what's the &%$#ing point? If it's not likely to get you anywhere and could be harmful to children who are currently suffering, why not just wait til the study's out and you have something new to bolster your case? I don't think Swedo's stupid, so I have to assume there's a motive behind this; I'm just not convinced the motive is what all of us here would like it to be. She's a scientist, not a practicing doc. She's not looking at patients, or individual children-- she's looking at groups of nameless, faceless subjects and how they may or may not be used as evidence to prove her hypothesis. As she states, "The goal of the new PANS criteria is to attempt to define the clinical presentation of a relatively narrow group of patients in order to improve the comparability of research samples." She then muses that it'll be interesting to watch what happens to the kids who "almost made it" but were excluded under the new diagnostic criteria (while they and their families will suffer due to misdiagnosis and inappropriate treatment). From the scientific side, our kids are dehumanized. I was actually pretty shocked that she personally shared the white paper with PANDAS Network since in it she's thrown a large portion of our children under the bus and admits as much-- the tone of which (within the white paper) is obviously impersonal and detached. If it were me, I would have at least sent something more personal along with it to try to mitigate its impact on the PANDAS community (and in so doing, hopefully pre-empt any backlash). Grrrrr.

No you're not crazy. Yes it is possible, probable even, that he's this sensitive to germs. You're not being paranoid. We live in holed-up mode when necessary. We're currently being paranoid and sheltering ds who really can't take another hit to his immune system. He's also in an exacerbated state, so homeschool group activities are off the table until his PANDAS is being treated effectively and he can better handle things. Our kids are remarkably similar in their PANDAS presentation-- we've even had book reading and throat clearing issues this week (!), though I think the book he was reading may have been making him do something else, and the throat clearing is just pretty constant so happening simultaneously. Anyway, for ds both issues are PANDAS-related. It sounds like your guy is definitely exacerbating, so I would go at that with all you can. I don't know if you've ever tried dosing with Motrin for quick, short term relief, but that'd be worth a shot. And depending on your ds's doctors and circumstances, a course of steroids might be considered at some point to bring down the inflammation. I've got to cut this short to run and get my kids some labs-- but wanted to reply quickly to say I think you're sane and your decisions justifiable. And if not, we're at least we'll be crazy/paranoid in good company Hang in there!

Was thinking about the white paper again today and started to wonder if the new published diagnostic criteria in any way correlates to the commonalities among IVIG study participants whose treatment was successful-- or perhaps excludes some whose treatment was not?

Going along with the questions posted above about the immune testing-- did they test only the quantitative immunoglobulins (IgG, IgM, IgA, IgE) or quantitative and the 4 IgG subclasses? I ask about the IgG subclasses, b/c from what I've seen it seems that there are differing schools of thought on that in the field of immunology so if you land w/ a doc in the "subclasses don't mean anything" camp they may not even look at them (or may dismiss low values). Did they test for specific antibody deficiencies (SAD)-- meaning did they check titers for the things he may have been vax'd for? Seems like many PANDAS kids end up deficient for s. pneumoniae-- incl. my kiddo. Also, there's another test they can run to check T and B cell function-- wish I had my son's reports here to tell you the specifics of the labs our immuno ran, but she called me with the results and I haven't been back into her office yet to get a hard copy. Anyway, a SAD and/or T and B cell issues would indicate that even in the presence of normal immunoglobulins the immune system is not functioning as it's supposed to and can give the docs some more info to go on. Another thing I'm wondering-- I know one of our peds at one point said something to me in passing about the other things kids may be carrying (naturally or otherwise) that would create a hospitable environment for the strep and/or allow it to "hide out" so even if the strep itself is not a "resistant" strain, it could be resistant b/c it can evade attempts to eradicate it. I don't really know much about this myself, but it stuck in my head as something to revisit and learn about at some point--since my's ds pattern of backsliding and strep recurrence is similar to your son's (though we know my ds has some significant immune deficiencies, and we've been focused on those as the cause for the chronic strep issues). Hopefully one of the parents with more biology mojo than me will be able to chime in on this if it is something worth investigating. Our dd has made remarkable progress with IVIG, and she'd been suffering w/ undx'd PANDAS for years. Our ds has chronic, recurrent strep and has never been able to maintain the gains he's made with abx and steroids. He'll be having IVIG shortly and after that he'll have his tonsils and adenoids removed.

It does seem as if it is something, and he's had a known exposure. I'd absolutely get him swabbed. My dd has mini-flares of her symptoms when exposed to strep, even if she doesn't get it herself. If she gets sick herself, there's no mini about it-- comes on as a full-blown exacerbation. With the intensity of her exacerbated state, I can pretty easily tell which scenario it's most likely going to be when we head to the doc's. With my ds it's tougher to tell-- we've seen spikes of varying intensity from exposure and when he's ill and not enough distinction between the two for me to guess which it'll be. The other thing I wanted to mention is that for both of my kids, both tics and OCD symptoms change up at times. It's almost like they cycle through them, or like when a trigger hits them, they reach into the OCD and tic grab bags, and come up with this exacerbation's set... So you may not always see the same presentation ever time. And both of mine are in constant motion when flaring, and fidgety. Our PANDAS doc saw some video and said it's very common for the kids to look like ours did with the motion and fidgets, that they're often just not be able to sit still. In one video my son was upside down and squirming all around the couch or hurling himself into it, while we were having a conversation-- so you're not alone with the couch-sharing thing. HTH

Hi Jen, My son gets a lot of rashes, if you want me to take a peek to see if your ds's looks familiar, feel free to pm me. Not that we've ID'd all of ds's rashes, but I know what some are and could at least say if it looks familiar and share anything docs may have suspected or shared with us re: similar rashes. I don't know of a way to upload a photo file directly to this forum-- I doubt it'd be possible b/c of server space/bandwidth issues. As far as websites go, forums are already pretty demanding on the hosting side (the server--computer-- where the site physically resides) and if members were able to upload photos, files, etc. to the database it would chew up significant storage space and bandwidth. (*explanation below) But sharing photos (and files, resources, etc.) came up in another thread recently and I raised the idea of creating a separate web space for that so we could have a browsable collection or database of shared images, info, etc. It seemed people were interested in that idea and I offered to set up something along those lines for the group, as long as it'd be something that would benefit this forum community, but wouldn't in any way compete or distract from it. Perhaps a good test run/short term solution would be a group photosharing account. That way, the individual images could be included in our forum posts here (notice if you click the insert image tag you can enter a url to link to the image). I'd be happy to setup and administer such a group and if we decided down the road we wanted a more formal "PANS library" sort of website I could produce that for the group, too-- it's part of what I do professionally. Oh-- you could also upload your rash pic to a photosharing account of your own and post it here. -thenmama-- probably as or more exhausted and delirious right now than the pack of tween girls we've got camped out downstairs The probably-more-than-you-need/want to know explanation about how all this stuff works: *Bandwidth is the transfer, or carrying back and forth of data or files, etc. stored on the disk. It's sort of like the process and energy of getting things out of a closet to use and putting them away again when done. If forum members could upload files, especially large image/media files, the closet (database/disk space) would get crowded or overstuffed, and the stuff that needs to be carried would be quite heavy so more energy would be expended per trip back and forth to the closet, which either reduces the number of trips one can make in a given period of time, and/or makes the process slower. Whenever we load the forum page, login, click to open a thread, make a post, submit a post, etc. we are getting things in and out of the closet (database). With web hosting, excessive demands on storage and bandwidth make performance suffer and usually jacks up the price of hosting, and if the demands exceed the monthly limits of your account your site could be shut down, temporarily or permanently, by the hosting company. The reason I proposed an offsite resource/storage option was so we would all have a common place to share/access files, but because it'd be in a separate closet it would not interfere with the functionality of this one (or ask too much of the generous folks who provide us this space).

Chiming in to agree with what the other wise posters have stated: 1) test for strep, other infections, etc. and if she's on abx, ask about changing or adding to it for the short term and/or try some ibuprofen, or steroid course depending on your child's circumstances and how doc prefers to treat. My son has gone into flares while on abx (he has a resistant strep and immune issues) and for both kids, without fail, if the OCD spikes, we find something underlying that's causing it. Our dd has also had some smaller scale spikes from exposure to others in our home who had strep. She generally doesn't go into the flaming exacerbation she'd experience if she herself had it, but the PANDAS definitely ramps up. So yes, yes, yes-- investigate the cause and treat medically first and foremost. In the meantime, I would definitely start looking into CBT: ERP it has literally saved us (we spent years doing things the wrong way and had all become enslaved to the OCD) and while you're treating medically and looking into options for therapy maybe you could pick up or borrow a book or two on CBT/ERP to help you understand what it is, how it works, and how you might proceed w/ your child in the short term re: how to approach the rituals and your participation in them. Here are a couple of books to give you an idea: Talking Back to OCD What to do when your child has OCD That author also has a book for children that we've used: Up and Down the Worry Hill There are others, too-- if you look at the "customers also bought/viewed" fields on Amazon you'll see there's a bunch. Your library may even have some.

maybe nocturnal enuresis? that was my guess-- when my first two reads, "northeast" and Nebraska, seemed contextually off mark And, would like to add that missionmom, I'm glad you've found this forum and your son is getting help!

Oh Airial-- never fear-- our kids will get where they need to go! Both of my kids (also both gifted and both struggle with fine motor issues due to PANS) have found ways to overcome the obstacles posed by the PANDAS fine motor skill deterioration. My dd is passionate about art, especially design, and she wants to be a designer when she grows up. Drawing and sewing are her things and when PANDAS impacts her use of her hands it's pretty devastating for her-- but she's found ways to get over/around/past it. Your son will, too. I want to share with you a link to an article about a young woman who really inspired my dd-- a gifted artist, thinker, and activist who has been disabled since birth due to environmental toxins and paints with her mouth. If someone who cannot use her hands can become a successful painter-- we can believe that our kids will also find their way to becoming who and what they need to be, as well. Link here Anyway, I do have so much more to share with you given the similarities of our younger children's situations--- but I'm not even supposed to be here right now! Back at it I go...

We've used the program Airial's child's school is using with him. It's called Handwriting Without Tears and we purchased it ourselves (we homeschool). The OTs my children have seen both through the PS system and private have all used that program. It is a very gentle and thoughtfully designed program (IMHO) and my kids responded very well to it. BUT, neither of them would do it independently, or do well with it, while flaring and success is variable depending on their state of health. For my dd, who had developed her fine motor skills more before the PANDAS kicked in, she goes back and forth between lovely and illegible handwriting, with the determining factor being whether or not she's in exacerbation. For my ds the PANDAS kicked in so young that he never really got off the ground and at 7 it's still just not there (of course, he's not had success with abx and we're headed toward IVIG so hopefully after that we'll be able to make some progress. Interestingly, he got tired of being slowed down and frustrated by handwriting and taught himself to type this year. Anyway, much more I'd like to add about this based on our experiences, so I'll try to return to it over the weekend sometime. We're in full blown CRAZY mode for a couple of days!

My dd does great on Augmentin XR, as well. My ds has resistant strep and an immune deficiency and needs to take Clindamycin for that-- and even when he's had a recurrence of the strep dd has never picked it back up on Augmentin. Good luck-- hope your little guy is feeling better soon!

Stepping back from my personal connection to this and trying to view the white paper with some objectivity-- or at least an outsider's view, this is how I'd see it: This paper is not about us and our kids. This paper is really about building the case for PANS/PANDAS, putting the "controversy" and fuss over it to bed, and officially establishing it as a distinct, recognized condition. The biggest naysayers/obstacles to achieving that come from the TS camp (K&S). Bring it back around to OCD as primary diagnostic criteria (remember why Swedo began the research that led to PANDAS) and relegate tics to the concurrent symptoms category, you've both created a more specific condition (meaning it doesn't tread on as many other specialties' turf) and you shut down the case and relevance of the most direct threat/hindrance to reaching your desired end. Without tics as primary, there's not a direct conflict with K&S's work/area and even if they don't back down, their expertise in their area of specialty doesn't hold so much weight (b/c tics look like an optional concurrent symptom from the menu of additional features meaning kids may or may not have them). From a distance, I see it as a strategic, political move. Filling back into my own skin, I'm worried about this and really hope it is not harmful to the children in our community who are tic-only or tic-mostly, and others like them. I also feel like the paper stopped short of where it could have gone (if any of its aim was toward helping the kids w/ existing PANS in the short term)- but more on that later, my boy looks about to blow...

Kim, I agree with you that there are problems on this front all the way around. But, I also think that we can't let individual polluters off the hook just because the pond is already contaminated. To take a stand against pollution while spewing your own toxins into the water makes you no better than those you're railing against--you're equally unethical and untrustworthy, just standing on a different bank... And looking from there to the bigger picture, this method of resistance is simply that--resistance. And this unproductive, hostile dichotomy leaves those who're undecided with nowhere to turn, nothing to trust as they try to choose what's best between one set of lies and another. The opposing sides of the issue then just perpetuate the opposition and animosity, by hurling accusations back and forth and easily dismissing one another because neither side is operating honestly, ethically, or in the best interest of ALL involved. I would LOVE to see both sides let go of that dysfunctional model and meet where they agree rather than where they diverge: nobody wants children to suffer or die due to preventable illness and nobody wants children to suffer and die due to the vaccinations used to prevent those illnesses. What if they started there? What if both came to the table willing to work as allies? If they stopped trying to disprove one another, stopped retaliating by funding and producing studies designed to counter what the other camp says, and instead started working toward the same goal--protecting children. Maybe started funding and producing studies aimed at figuring out which children the vaccines are safe for, and which they may harm, and how to proceed from there. Anyway, that's how it'd play out in the just and peaceful world of my imagination, but out here in the real world it ain't gonna happen b/c of $$, deep-seated (not unwarranted) mistrust, and a cultural proclivity for divisiveness. Sigh. Think I'll crawl back into my head for a while this afternoon...

more from vax"truth" dot org: In the comments below the Mechtler-pneumovax post, she responds to a commenter-- here are the lowlights: "If you have read my other articles about The LeRoy Twelve (now 19 and counting), you will know that I have also asked for Dr. Trifiletti to investigate the vaccine-injury connection, particularly as it relates to the mandatory vaccination of students in New York with Pneumovax, which is not recommended for mass vaccination. I am very concerned that the students who are diagnosed with PANDAS may be lulled into a false sense of security if they have a positive response to antibiotics. It this is vaccine-related, they need to know that so they can protect themselves from future injury." If she really did contact him, I'd love to know how Dr. T responded to her request! and: "I do agree with your last question completely. I would also like to see a comparison of titers, particularly for the 23 strains contained in Pneumovax. There appears to be a reason why these particular students are demonstrating an inappropriate immune response to the strep bacteria. I would love to know more about why that is happening. That’s exactly what I’ve been calling for all along. I do have to say that while I think Dr. Trifiletti’s explanation of PANDAS is too simple, I at least agree with his approach of doing the bloodwork. Dr. Mechtler’s diagnosis of “Conversion Disorder” without ruling out medical conditions first is inexcusable and goes against the multi-axial assessment guidelines of the DSM-IV-TR. To me, that just smacks of covering the butts of those who ply him with hundreds of thousands of dollars in speaking fees." It's not Dr T' definition of PANDAS. Obviously he can't re-define a medical condition while he's under a microscope for even raising it as a possibility. Plus, the only definition she's interested in is her own, so she'd only be satisfied if the pneumococcal vax is named as as the cause. Maybe she'll contact Swedo about that one How can one be an anti-vax crusader and clearly not get the basic science stuff? And she claims to have treated people's children with biomed!

DCmom and Powpow-- thanks for pointing that out. You're right, it's not what I intended by trigger avoidance and I'm really glad you mentioned it. We also went down the "dealing with OCD the wrong way" road--prior to dd being dx'd with OCD, which was prior to her being dx'd with PANDAS. It cost us terribly, too. Dd's OCD grew worse and worse--it was fed by the wrong approaches (most of which were suggested by her docs and therapists then). It got so out of control she could not leave the house and even then was gripped by it and unable to function and was melting down or raging, or sobbing uncontrollably and very depressed, and we feared we wouldn't be able to keep her in the home anymore. I learned about CBT then, found a good therapist and left the old one, and started ERP/CBT with her. She couldn't do it at first then one day she could (didn't realize it at the time but looking back at records she'd had a couple of rounds of abx right before she started being able to participate in the ERP). Once she was able, it was the best thing we could have done-- for her and the rest of us. She was OCD free for about a year. Then she got sick, everything came back 100mph and her state in exacerbation is too far gone to do ERP so we had months of living in that nightmare state. But, then we finally learned she had PANDAS and once she'd had IVIG she was able to use the ERP to quickly knock out the remaining bits of OCD. So I agree with you about giving in to OCD and that ERP/CBT is nothing without medical treatment. When my kids are flaring it's so intense they can't even think about ERP. But when their PANDAS is treated it is an excellent tool for undoing the OCD patterns and behaviors they learned in their exacerbated state. I meant for the trigger avoidance and advanced planning to speak to behavior issues that were not OCD-related but I can see from re-reading my post that wasn't clear. When I first started to reply I thought the OP was referring to non-OCD behavioral/situational issues-- like problems that arise trying to get out of the house. For those things I find it helpful to troubleshoot the situation and try to find ways to avoid further issues w/ them in the future. For example: child is disorganized and can never remember where he left his shoes and half the time they've been left in two different locations. Whenever it's time to go, he can't find his shoes, everyone is fussing at him because they're going to be late, he gets upset, etc. Meltdown occurs. Then I'd look at the situation, realize he needed some support to help him with organization, and maybe we'd come up with some sort of shoe storage system. Or maybe a poky or daydreamy child takes too long to eat, get dressed and ready before getting out in the mornings, which leads to being hurried and there's tension with her parents who can't be late for work, and this morning situation often ends in tears and tantrums... I'd think it was time to revisit the morning routine and try to adapt it in a way that is better designed for her to be successful - say get up a half hour earlier, select and lay out clothing in advance... That sort of thing-- and assuming that the shoes and morning routine issues were just situational and not the result of the child's OCD. But then while posting I realized that with my son, sometimes even the things others would not necessarily recognize as OCD are, in fact, OCD-driven. And he's got underlying infections and immune issues so he doesn't maintain the relief for any duration like his sister does (hopefully that will change with his upcoming treatments). So we'll be going along like all is great and then suddenly he'll be melting down and screaming at the older women in the sewing shop because the cute little Westie dog that's always there stayed home with its sick owner that day, and he's come to the shop specifically to see that dog. And the next thing I know the older women, who are unfortunately that stereotypical busybody sort of older women who think mothers nowadays are totally incompetent because they don't do things the way they did them, decide to get themselves involved by speaking directly to him as if he's their child and needs to be put in his place. So now I'm scooping up a screaming, nearly purple seven-year-old who's calling old women liars while the capillaries in his face are bursting out petechiae with my one arm and I'm carrying dd's sewing machine in the other arm, while telling the little old women to back the bleep off my kid while I try to push myself, and him and the machine out the door without dropping either of them. At this point dd comes out from her class to (be mortified and) join us and without asking grabs my phone and follows behind us, documenting the scene on video for our PANDAS doc. I can only imagine how this looked to the other people in the mall parking lot. Somehow we get all the way home-- even though ds, still raging, insists that the earth is spinning the wrong way and has shifted the location of our house. About an hour later, when he's finally calm, I breathe, curse, and state the obvious: it's back. Familiar? The reason I mention this is that our PANDAS doc saw the video and noted that he was in fight or flight for an extraordinarily long time (we always seem to impress the wrong people--the PANDAS doc, allergist, knee surgeon...), and confirmed that in situations like this, these kids have no control. Unless we address the medical issue that's causing it, we can't expect them to handle it in a way they're not physically capable of doing. We wouldn't expect a diabetic whose condition is not well controlled to be able to control it with behavioral techniques or because we've threatened to take away their video games... kwim? That's why I brought up the PANDAS treatment, because for us the meltdowns really are a non-issue when the kids are not in exacerbation. When my kids meltdown, like really meltdown and especially if it goes on for any duration-- that's the PANDAS in action and we need to jump on it medically. Once the treatment is effective, we may still have to address some lingering issues, but the difference is that b/c the PANDAS is being treated successfully- we CAN properly address them. Not that I won't still have the everyday issues to problem solve. I'll still need to re-conceptualize my back door shoe bins and closets so we'll eventually be able to leave the house with two shoes and both socks on, and maybe even a pair of underwear beneath the outfit, which would, ideally, be worn right-side-out Anyway, thanks again for mentioning that issue, and prompting me to clarify. Much appreciated.