wisdom_seeker

Thanks for pointing out another option. I'll consider the HTCs, but only if there are still problems once we've done testing for other common causes, Tx, and remediation for stuff like mold. The hookworm were pretty expensive, and, more importantly, had been beneficial, especially for DS16. So I'll cross my fingers and look elsewhere first. in good news / bad news, while he's on antibiotics, the hookworm are mostly dormant, so they're not helping or hurting. We don't know why this effect -- possibly they need a healthy gut microbiome to breed, and their friends keep getting killed off. Or possibly antibiotics are directly toxic to the eggs -- in any case, for another few weeks, while he's on systemic antibiotics, he'll be getting few of the immunomodulatory effects we'd bought them for. Interestingly, after the antibiotics end, normally it takes 6-8 wks before any beneficial effects re-start. However, we can goose them into action faster by a tiny supplemental dose. It seems that the dormant residents notice the invaders, say "oh no you don't; this is our territory!" and start reproducing again. If we do that boost, (and he's not already in an exacerbation, and doesn't get sick soon after) we might have a quick test of whether that makes him worse.

Actually, I want to clarify what I wrote: your daughter has PANDAS, since she did have strep-associated OCD in the past, and she is having a PANS flare. The only question is whether this is a strep-associated flare.... or from another bacterial infection. Now why might she have had a negative culture? And which test is the more accurate? The rapid test. (You need the culture to do susceptibility testing, or if the rapid test is negative, but if the rapid test is positive, I claim that's definitive). Here's the expanded argument: According to a large literature review of rapid strep test accuracy, the rapid strep test is highly specific -- in the quote below, according to a large meta-analysis: 96% of kids who test positive on rapid strep do test positive on culture [meaning on a well-done follow up culture or blood agar]. That's why guidelines in the US and Europe say that you can rely on the rapid test alone. Sensitivity = % of finding a positive if it is truly infected specificity = likelihood of a positive being a true positive. So in the above review of studies, the rapid test missed 11-16% of the true strep cases, (false negatives) however a positive rapid test would be a true positive in 95-97% of the time (3-5% false positive). Meaning that when using these current rapid GAS test technologies, 99% of the time a positive rapid test is a correct reflection of a strep infection. So why might your daughter test negative on a culture? Here are some ideas: If it had been a while since her infection, her body might have cleared most of the infection, leaving few live cocci. Perhaps only left over on one part of one tonsil, or maybe even just in one sinus, with post-nasal drip infected on one side, but not the tonsils. (Analogy: I get frequent sinusitis and I have asthma. Because I sleep on my left, if I have only a smoldering infection it's on the left. In addition to left cheek pain, I typically have left-sided sore throat, swollen neck nodes on the left, both from the left-sided post-nasal drip, and left-sided chest tightness, so I know it can get lateralized this way). If she gagged enough on the rapid test swab that she gagged almost instantly on the culture swab, it's quite possible the RN/MD wasn't able to get an adequate throat culture swab. (Adequate requires both tonsils and the back of the throat. ... for the reason in #1. W/o that you can get a false negative.) If the culture was read after 24 hrs and discarded, rather than cultured for 72 hrs, rare strep might not have had time to grow enough and would have been falsely read as negative. Or, if the strep cells are mostly dead, then their DNA will still be identified on the rapid strep test, (DNA/protein based), but dead cells will not grow on a culture. Finally, apparently occasionally strep grows w/in epithelial cells, and would require a scrape/punch to get live strep organisms and a longer(?) anaerobic culture. The rapid strep test does not care whether the strep DNA found is aerobic or anaerobic the test simply looks for DNA or cell fragments. (DNA probe, PCR, etc). Sources -- I can come up with more, but it's late. Medscape: "Rapid Strep test accurate" 9/8/14 http://www.medscape.com/viewarticle/831298 (free registration) http://latitudes.org/forums/index.php?showtopic=13068 (others who have your situation, trying to figure out why) For #4, read Stephanie's recollection "....Our ped later explained why [positive rapid, neg culture].... Something about [her] strep being "dead cells" meaning that since he had been exposed to azith that week (his usual prophylactic dose), whatever grew back from that was only able to show up on the rapid."

She may have PANS, the umbrella category that does not require strep to be the causative agent, but has the same autoinflammatory effects on the brain, and so the same symptoms. It's frustrating when you can't identify the cause easily, because then you can't test for susceptibility to antibiotic X or Y. That's the situation we're in. But my son did improve on a prednisone burst, which showed that the cause was inflammatory. Had she been ill with anything in the couple of months beforehand?

I know this is an odd question. And may label me as a crack-pot. Five years ago (after doing a ton of PubMed research) my sons and I got a small dose of helminths as immunomodulatory probiotics, and a few months after that my son (DS 11) finally started having colds that didn't immediately turn into sinus infections. He'd not had that for years and years. And allergy shots were no longer as painful, with smaller local reactions, able to go to a higher maintenance dose. No longer out of school as often. We were delighted. (The theory is an expansion of the hygiene hypothesis, that our bodies co-evolved with parasites as well as bacteria; that the things we are allergic to typically have the same proteins as the parasites we would normally host, but since our immune system can't target the parasites, it targets look-alike environmental allergens instead, or tissues in our own body, producing autoimmune illnesses. The helminths protect themselves by excreting substances that immunomodulate our system to increase t-regs and decrease chronic inflammation. No helminths -> more inflammation. And that's how it seemed to work out for us. But helminths only live 3-5 years, and he's been ill much more frequently the last few winters, so in early August we all were re-inoculated. And then two weeks later he went to school, and after two days of school this kid -- who likes school -- had a sudden onset of PANS, first appearing as intense general and school anxiety. So I've been hoping that the hookworm would serve him well again, and actually treat the PANS once the helminths really mature, but a part of me wonders if this time we might have done him wrong. I'd hate to eliminate the helminths needlessly -- but worry about leaving a stone unturned just because it's not the answer I would want. So that's why I'm asking for others' experiences. I don't think I'd find anything by searching for PANS + helminths on PubMed!!!

Oh, BTW, my son has allergies to Sulfa and clindamycin, so that one's out. But when I had chronic sinusitis years ago we did some gentamycin irrigations, which worked wonders. Still I worry about what if we induce resistance to gento whenever I go to such an nth generation drug. Hmm... will the MARCONs report list which staph(s) were found and what they were resistant to? I should get that before going to our sinus guys. Clearly I'm sill pretty new at this. But trying to learn as quick as I can. Thanks again for all the info, sanity-check, and ideas for options.

Wow! You're a fount of information! Thank you!!! Do you happen to have the reference to that article? And, I explained the BBB to him and have him irrigating again. And using a nose spray. Thank heavens he's not an "I know best" sort of teen. After the New Year's I can take my son to our sinus specialist for an endoscopic sinus culture. We did one in Oct with a local ENT, which was negative, but then Amy Smith found the MARCONs. Ds. Vaughan and Purkey at Cal Sinus do only rhinosinusitis, and they do a more thorough endoscopic exam & culture. Here's what puzzles me now .... MARCONS are described as slow-growing commensal, non-infectious staph, so a regular sinus culture wouldn't grow them, right? Or would grow them, but because they'd be something like S. epidermis, would simply describe them as "normal flora"? If possible, Dr. Vaughan treats sinusitis like ours with a nasal nebulizer he invented for spraying topical Ciprodex, which also isn't irritating, (but there's no antifungal). Is yours a compounded liquid or something that you mix yourself? And, how did you find the mold exposure? We have a mild musty smell in our semi-basement, possibly from condensation against concrete blocks (we'd done major remediation 8 years ago when we bought the house, so there's perimeter drainage at the foundation, but includes a storage area behind doors that may be the source, even though we keep one of the doors open. And with my son in HS, who knows if he was exposed to there. In fact, his PANS was after the 2nd day of school this August, so .... We're in Nor Cal, so there wasn't rain in the summer. However,.... what about the room AC in one of the portable classrooms he was in? After it had sat closed up for three weeks, then got turned on when the teachers started prepping. With all the sinus infections he's had, he might not be able to smell mold like I usually can. Well, school will be starting again next week, so I'd better be figuring this out.

As far as infections, we've not had IVIG, but if he's got a red ear on that side, plus a low-grade fever, both somewhat responsive to NSAIDs, that's what I'd be thinking about as well. What side does your son sleep on? I wonder your son might have something like a sinus infection in a left maxillary or ethmoid sinus, despite the Augmentin. (Once when my DS16 was DS9 and had complained of ear pain, it turned out to be complication of a sinus infection, as was pneumonia. (and too he was going to school, for he was on antibiotics already, and at that point was hardly ever completely healthy) Second, I am glad that you understand he's suffering the entire day, even though he only loses it for part, after school. DS16, who now has PANS talks about how hard he has to work to keep it together, (esp around DH, who wouldn't hesitate to take away media for profanity, no matter that it is one of the few things DS uses to distract himself and pull himself together). So keeping it together around DH means that he's sometimes less helpful, more whiny and/or mildly aggressive around me, because I'm safer. And then he feels guilty, because that's not how he wants to act.... but can't help it. So your son keeping it together at school may well push him to his limit. It's impressive that he's self-aware and articulate enough to explain that! Tell him so!

Hi Lim and Beerae -- @Beerae22: best wishes for your family's recovery as well. PANS stinks. Especially when you have multiple little ones miserable and simultaneously needing you. My hat off to you. Thanks to both you and @Lim re: the Lyme. I'll try to reconstruct the dates. He hasn't gone more than a month between, that's for sure. hmm.....Is Lyme or one of the co-infections known for sudden onset muscle-aches? This last January, after DS was ill for over a month with one sinus infection after another (and the 2nd one unresponsive to Omnicef), DS suddenly came down with a miserable case of flu-like muscle aches and malaise (but NO fever). Started a day or so after he switched to Biaxin (which amazing against the sinus infection), and lasted for at least a month. Initially the muscle aches and sensitivity were awful enough that he couldn't sleep well, couldn't even tolerate flannel sheets, couldn't talk, laugh without pain. And yes, included brain fog, fatigue, unusual anxiety etc. Now that you mentioned Lyme, I wonder if that could have been a Jarisch-Herxheimer reaction. However, a Herx response would have started w/in hours of an effective antibiotic, right? And would only last for a few days, wouldn't it? Not a month. On the other hand, since DS was in such pain and we'd suspected Biaxin, we stopped Biaxin after 3 days or so and switched to Augmentin. Didn't help the pain, unfortunately, only made him recover a lot more slowly from the sinusitis. And in February, as he was getting better, he developed school anxiety and PTSD (from reading about the Holocaust). And that's the last he was on antibiotics till re-starting Augmentin this Nov. to attempt to treat the PANS. PS. But even Lyme kids get plain colds and sinus infections, right? I think this December's infection likely was a cold, as DH got a cold from DH's boss and family friend (who ought to know better than to come to our PANS household with a fresh cold)..... It would have gotten to DS way of DH, who believes that I'm paranoid insane for asking DH to still wear a face mask around DS, (because, "as everyone knows, you're only infectious with a cold before you show symptoms, and certainly not 5 days after"). This even though there are lots of cold viruses with different patterns, but I'm no MD, (and even if I was, DH would still need to hear it from a more credible MD). End of venting. In great news, I just found out tonight that (pending medical review) our insurance will pay for most of the Cunningham panel. (we'll still wind up paying it all, as we've got a $2,600 deductible on our BCBS, but at least it'll count toward the deductible.)

Interesting. Buhner's point was that he'd only treat Marcons if it is bothering the OP; that the dangers of Marcons are over-exaggerated. Is that what you meant? As far as literature on non-invasive nasal marcons, do you know which group(s) are doing clinical trials? wisdom_seeker PS. Normally I wouldn't worry about giving DS nose sprays even non-reimbursed meds, but with PANS I've learned I need to pick my tx battles. That's why I want to get the data.

My DS16 was just found to be positive for nasal Marcons. With the PANS, DS hates to irrigate his sinuses, so I'll do my best to do it if it is really worthwhile, but not if the Marcons are ubiquitous perhaps innocent bystanders. Except for references to Dr. Shoemaker's protocol, I've found very little -- and nothing on PubMed on treating nasal colonization. On Steven Buhner, who seems to treat Lyme and coinfections and (sometimes) Marcons wrote on http://buhnerhealinglyme.com/co-infections/marcons-staph-bacteria/that: So is a Marcons result a significant finding? Should I search for it under a different term? Does anyone have references, ideally to clinical trials of diagnosis and treatment in kids with cystic fibrosis or chronic sinusitis. I don't even have a good model for what happens to these colonies when someone comes down with a cold -- do they go forth and multiply in the more copious secretions, or is a PANS flare from a cold from the obvious thing -- the viral inflammation?

My DS 16 just got a new PANS flare this weekend. This will be his 8th cold in the last 8 months. Since he had his first (obvious) PANS symptoms in mid-August, he's had a cold and exacerbation about once per month. Does anyone else on this forum have that? I'm feeling really isolated. And worried -- he's already taken 8 weeks of Augmentin, NSAIDs, Neurontin, SNRIs, (and trazodone (for sleep), and prednisone. Prednisone 60mg helped partially, but it's a dangerous band-aid. He finally just got down to 5 mg prednisone, able to shower, began pet-sitting on Saturday, walked a dog for a mile, and then on Sunday his anxiety was sky high again, getting out of his pjs (much less out of the house), or showering are all impossible. So we upped the prednisone again to 40 mg (x3days), but so far there's no difference. He's discouraged, listless, angry. Spends his days marathon-watching Star Trek: Voyager to keep his anxiety down to a dull roar, to keep from going crazy. Would IVIG even help? In PANDAS kids, the key to getting benefit from IVIG seems to be to keep the child from getting another strep infection, but no matter what DS and I seem to do he gets a new cold -- and a new PANS flare -- every month. Any ideas for who to talk to, what to do? Wisdom_seeker PS. He may have a partial IgA deficiency ( IgA = 57.1 and 38mg/dL at age 8 and 13 respectively), with completely normal total IgG (914 and 1040). Would IVIG even help reduce the odds of viral infections? PPS. I've thought of home-schooling; he's barely at school due to the school anxiety, but most of his colds seem to have been brought in by my DH.

Thank you all for your words of support. And also the advice to just move on. With your support, I don't feel so alone, and I think I have moved on. It also helps that one of our MDs said that he wouldn't have had any expectations for this particular neurologist -- that he's OK for textbook cases, but not for anything complex, anything that requires 'out of the box' thinking, the sort that both my sons seem to need. I've now gotten a referral to one of the child neurologists who work at the PANS/PANDAS clinic, and hope for a better outcome. I am a bit apprehensive, because he just isn't a textbook case. Now (after 3 weeks of abx and 2 weeks of prednisone) he doesn't have the choreiform movements any more, the sensory defensiveness is a bit better, though rubber and water are still his enemies. But mostly, his symptom where his brain thinks that his other hand must be the actor if someone touches his arm is so weird (e.g. L hand if touched on R arm). Especially the part where the supposed "actor" hand then disappears (and then fades in and out) of his brain's body map. The shrink still thinks it's part of the ganglia driven sensorimotor dysfunction, but I still worry it will make him labeled a crockpot. So I hope that the neurologist can still see some signs that say "he's telling the truth". And that she will order the set of tests to confirm the Dx and to figure out what the trigger(s) might be.

So I should've written, ds 16 doesn't have tics. He still has light/sound sensitivity (but I'd stupidly forgotten to mention it), and the sensory hypersensitivities, super high, inexplicable anxiety, fatigue, sometimes brain fog, restlessness. Last week he had choreiform finger movements when in the stressed arms out position. But now he's been on abx for 18 days, and 60mg prednisone for 4 days, and today had no choreiform movments, and fewer sensititivities. So he's getting better!!! No thanks to the CBT he'd had since August -- he was still getting worse till two days ago. I can imagine all the neu

Well, we met with the local pedi neurologist, and I was disappointed -- and then pissed and worried. First, he hadn't heard of Dr. Thienemann, one of the authors of the PANS consensus committee, and a founder of the Packard (Stanford) PANS/PANDAS clinic. (She gave the PANS dx). And this neurologist did even fewer of the basic neurological tests that ds16's pediatrician did years ago. And based on that he concluded that: there was no peripheral neuropathy (duh) no problem with his thalamic neurological system (whatever that is), and no generalized pain syndrome, and thus no reason for his sensory hypersensitivities DS16's problems "originate in the upper cortex", in other words, "that this is an anxiety-driven issue, possibly OCD-type thinking", and "best treated by his psychiatrist". He knew that we'd come with a diagnosis of PANS, still, when I asked for more of an explanation, this neurologist simply looked at me and answered: "I just did". Really? This from an MD? He didn't even look for choreiform movements; and he made no mention of the basal ganglia, the sensory motor loop that Dr. Thienemann had explained to us. I'd find it funny, except that he said to folow up with the psychiatrist, and that he'll "put a note to that effect in ds16's electronic record," Though I had been told by another MD not to expect much from this neurologist I am concerned that this dx will ruin my son's (and my) credibility. We've already done CBT for a few months with NO success, (unlike other times he couldn't figure out why he's so anxious, and can't be talked out of the sensory hypersensitivities he has). And anti-anxiety meds hadn't done anything. That's what we'd found years ago with my older PANDAS son, and what made us start looking at PANS for this kid. So, what would you do with this? And what should I expect from a good neurological examination anyway?

Thanks! That article is useful, both in showing that the MRI would have a much better negative predictive value (if the basal ganglia are small, then PANS is unlikely), because the larger volumes appeared in both the cases and controls. Still, if all three structures' volumes were above the mean (but not the thalamus), then that would strongly suggest that there is inflammation. So especially since the MRI doesn't involve x-rays, it seems like a good thing to do. wisdom_seeker

Thank you all for your support and ideas. You've given me things to look up and think about. To answer the questions: 1. We're in the San Francisco Bay Area, but ineligible to be seen at the Stanford (Packard) PANS/PANDAS clinic because ds16 doesn't fit their current research study criteria, and they're way overloaded. 2. He describes the hand as "phasing in and out", where he stops feeling and seeing it, then a minute or two later it slowly fades back into existence, is visible, and then it fades out, so he can see the stuff behind it. Not exactly; he can't read a sign or newspaper behind it, but his brain fills in "out of focus" stuff, so he can 'see' his blanket or the wall. We guess that it is the same mechanism our brain uses when filling in the blind spot from our fovea, and we're not aware that we even have a blind spot. When his hand is "phased out", it feels very odd when he moves his fingers intentionally -- because he says he doesn't know quite where they are. However when the hand "phases in", it is the right size, shape, and feels like his normal, completely alive hand, so in that sense it's different than the "Alice in Wondrland" or the "cotard delusion" . What is similar is that what he experiences is a repeatable distortion of his body map -- yet it is not a hallucination in the ordinary sense. 3. Update: Today we saw a clinical psychologist who remebered a professor of hers describing some adult neurology patients whose experience was exactly like ds16s. She's emailing him to find out what the brain issue was. Yesterday we were seen by a PANS psychiatrist, MT. She thinks the disappearing body parts are a manifestation of the brain inflammation, just like his sensory defensiveness (he can't bear to touch glass, metal, porcelain). Dr. MT increased his prednisone from 20 to 60mg/day for 5 days, and gave us a referral to a neurologist. Question: What would a neurologist visit tell us, assuming that it is from PANS -- would an MRI or EEG show anything? Or is it simply for reassurance (of course, that's no small matter). Or to rule out other things, to make a better case for IVIG if we wind up needing that??

I'm new to this forum, though I've been reading avidly, trying to absorb people's experiences -- and get validation. Last week my DS16 got a new symptom that creeps him out and puzzles me. He is newly dx with PANS, and more complex symptoms than DS21, who used to get PANDAS exacerbations w/ sinusitis, (responsive to Abx (+ steroids)). Recently DS16 has got severe anxiety, panic of dark (at 16!), intense anger / emotionality, sensory intolerance (glass, ceramic, rubbery textures ..), deteriorated handwriting, and some choreiform movements. Gifted (well 2E) but w/ inexplicable terror about school since August. Last week, a week after the PANS dx, and while on Augmentin, he got a new infection, and a severe exacerbation with the sensory stuff above, plus the following neurological puzzle. We call it the reverse-phantom or 'disappearing hand': Any time he is touched unexpectedly on his arm, shoulder, back, foot..., by someone else, when he doesn't see the actor's hand NOR his own hands, his brain thinks that it must have been by his own hand(s), and so his hands must have gotten there. But since his fingers/palm didn't feel the touch they supposedy made -- suddenly they disappear from his body-schema . He KNOWS the hand is gone (so there's no point to look for it). It doesn't happen if a) he can see my hand touching his body, or he can see his hands as he gets touched, © he has his hands touching some fidget or cat... so he knows where both hands are. As you can imagine, it's pretty frightening for him. Has anyone else had this? DS16 says that even when brings up his hand, the hand "phases in and out" for a few minutes, as if his body does and then doesn't have a hand. Today a few of his fingetrtips & nails disappeared for a while, when he felt I'd stroked his back with a fingernail. Last Fri he was doing a neuropsych eval (for IEP). w/ an excellent, experienced PsychD. She siad that it's definitely neurological, maybe the temporoparietal junction (TPJ), and/or the extrastriate body area (EBA), which together process our body's sensory input and create/maintain our model of our embodied self and where all the parts are in space. Are the TPJ or EBA anywhere close to the basal ganglia, immunologically related, or connected to them? I don't know who to go to -- it sounds so weird, I'm concerned he won't be believed. A psychiatrist already wondered if he was psychotic (the PsychD laughed at that, but...I'm gun-shy). We're in the SF Bay Area.