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wisdom_seeker

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wisdom_seeker last won the day on April 13 2018

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    PANS, PANDAS

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  1. Oh do I understand the stuck and pissed, and $$$ stressed and tired. If you want to talk over what you've already done and seen, and brainstorm, give me a call. I'm not an environmental hygienist, but I've unfortunately dealt with hidden sources. And as the CIH I work with repeatedly told me, "an outlet or hairline crack in the drywall is like a highway" and the killer thing is that "every time you change air pressure, say by closing a door, it forces mold fragments & mycotoxins out through those gaps". So if I can help with the detective work, I will. Where are you located? Lucy 408-464-3255 PS. I'm a night owl on PST, in the SF Bay Area.
  2. TLDR: What auto-antibodies have you seen in PANS kids that insurance didn't dismiss? We'd like a list of antibody tests or other evidence that can help get PEX authorized for a non-PANDAS kid. Details: My DS20 is pretty disabled due to MCAS and PANS symptoms, and his MD really wants to reboot his immune system due to his very high levels of auto-antibodies and dysregulated immune system. Because of his persistent high mycotoxins and persistently high IgEs, treatment with PEX --> IVIG + Rituximab makes more sense than IVIG -> Rituximab to us and at least some of his MDs. The problem is how to demonstrate medical necessity to insurance, since he's not at death's door, and doesn't have PANDAS. The autoantibodies found so far (some at 4-14x upper threshold) aren't the old "standard" ones, and he has very high IgE (1200-2300), so his MDs are guessing he's got other autoantibodies as well. I'd like to get him thoroughly tested for auto-antibodies before we reduce his IgGs more with steroids or invalidate tests by doing IVIG. So what tests have you found useful? Asking for sympathy / blowing off steam: His MDs can't argue for PEX under the PANDAS dx, for even when Cam-K II was seriously high at ~184, the Cunningham strep-specific Aabs were BELOW normal threshold, and his ASOs have always been 0. So Kiddo has either never had strep or he doesn't react. And silly me -- I missed the 2nd "easiest" time to justify PEX a year ago when he had lost 15% of body weight due to gastroparesis/MCAS (after the last major mold exposure we didn't know about). But at that point I wasn't thinking about PEX -- his anxiety was sky-high, he couldn't think, was getting scolded by his Pedi for not taking weight gain as a serious enough goal (he was trying!), he was given antipsychotics by a neurologist, and was threatened with a "behavioral eating disorders program". I wasn't forcing him too eat, so he never wound up in the ER. Instead his allergist gave him a tentative MCAS dx, nobody was talking autoimmunity as the mechanism, and so I jumped at the mast-cell stabilizer compounded drug -- instead of first investigating why he had mast cell activation, and making sure he threw up and had an ER visit to document the severity 🙄.). Or maybe he needs to stop taking the non-FDA-approved med for gastroparesis, and lose 10% of his body weight again -- shouldn't take too long 🙃(I'm kidding, but definitely frustrated by the catch-22. )
  3. Has anyone done CellTrend testing for auto-antibodies? This test was developed for POTS and ME/CFS, but surprisingly my son tested high positive for over half the 11 auto-antibodies in the panel. I'm treating this as very meaningful for likely AE. But would our insurance agree and pay for IVIG or PEX, based on a research test from Germany? Still it's enough for us to want to get serious about getting evidence to justify IVIG or PEX (both to us, DS20 himself, and insurance companies). However, years ago we'd spent $$$ for the Cunningham panel and insurance completely discounted that. So I'd like to know what other autoantibodies DS has, but I'd also like it to be meaningful to insurance companies. What have you found useful? Candidates I know are: Vibrant Wellness' Neural Zoomer Plus Moleculera labs' Cunningham Panel (much better for PANDAS than PANS) Cyrex Labs CellTrend' GmBH's CellTrend Mayo Clinic's ENS2 Labcorps Quest The only ones that are FDA-certified (?) and reimbursable in the US (as opposed to "research tests") are the last three -- the Mayo clinic's classical autoantibody panel (largely for cancer) and the very limited ones from Labcorps and Quest I care about getting info that's useful to us and to insurance companies. So if one of the first 4 was useful for anyone appealing for IVIG rejection, I'd love to hear that.
  4. Robin, I'm so surprised that there were no replies -- probably due to the holidays, because I know that we can't be the only ones who've dealt with mold. My sympathies go to you -- mold is such a pain to deal with, especially with a sick one and all the financial implications. We'd done a bunch of things over the three years since we discovered mold. And initially, despite all I knew, despite my love for my very ill DS, I made a variety of mistakes. What the best things to do are depends a lot on your specific situation -- do you know the source of the contamination? Do you have insurance that will cover some? What's contaminated? Just how bad is the contamination? How sick is your kid? Do you have some relatives/friends to stay with during remediation, etc. etc. A super-useful book is "Toxic" by Neil Nathan. With chapters on de-toxifying your body from mycotoxins (mold toxins). And a chapter (appendix?) by the incomparable John Banta, Certified Industrial Hygienist on cleaning. It's possible to read just the chapters you need up front though of course it's somewhat cumulative. It's become my bible. I'd do better to quote from there, but here are some initial guidelines, some of which I resisted initially. first do no harm. Meaning, avoid spreading the mold (don't open sealed boxes, don't open closed books, change your shoes & clothes when moving from contaminated to uncontaminated rooms (if any). But also, don't toss irreplaceable things like your grandmother's photographs and quilts. For such, if they're not wet, you can almost always stop any growth and set aside the question of if/how to restore till you have the time and emotional energy). If possible, get at least some consulting time from the inspector / mold remediation companies, certified industrial hygienists, etc. You may get some for free, some you may pay for, but it will save you mistakes. Before spending money on remediation (of the structure), make sure you have found ALL sources of water intrusion, both active (slow drip under the sink or from a leaky roof), and intermittent (say you get moisture in the attic only when the AC is on and a duct has condensation, or water coming through brick foundation, but only when the soil is saturated). Till you can move out minimize the exposure in your child(ren)'s bedroom. If your child's room is clean, keep it that way. If you have air-recirculating central heating, tape off the vent into your child's room to keep contaminated air out. Install a kid-safe room heater if needed. Maybe even Install a zippered doorway seal (we did. They're $20 from HD). Or a 2-overlapping plastic flaps system -- anything to reduce air flow into the child's room. Mold is pushed on air currents through tiny cracks whenever there are air pressure changes, like when the heater comes on or a door slams, so nothing is perfect, but Since mold settles, changing slippers just inside the room helps. If the child's room wasn't that clean, but another room is, move them. You can wipe down a wooden crib really carefully, and get a new crib mattress. Don't move a dirty mattress (or pillow) into a clean room though; air beds are much cheaper and nicer than they used to be, and have the advantage of never getting contaminated on the inside. Or at least cover the mattress with a bedbug-sealing zippered mattress cover. Get a good HEPA filter air cleaner and have it running 24/7 within 3-4' of your child's head, esp. when they're in bed. Sometimes you can score a great "dinged" model on Amazon of Austin Air, IQ air etc. I bought an Austin Air for less than the price of a replacement filter. But honestly, any reputable HEPA air cleaner, like the Honeywell 200/300, is going to be much better than none at all. The key is that it only collects and cleans air well from a 3-4' radius. Get a good sealed HEPA vacuum cleaner, and vacuum the house often. Wear a good face mask and gloves while handling contaminated stuff. Even the best fitting N100 face mask (with a valve) only reduces your exposure by about 80%, because the seal iis never perfect. So pay extra attention to the seal, (I had to buy 4 different brands before I found one that fit my short face). Vacuum all dusty objects before handling them. If at least the most vulnerable parts of the family can move out while the unaffected members stay behind to supervise remediation (from an IICRC certified firm), that will help. (I ERMI tested my relatives' bedrooms first) Throw out any fabric-upholstered furniture, pillows, mattresses and carpeting in significantly contaminated rooms. There are exceptions to this but as those things are impossible to clean completely, this is the clearest, "easy to say" rule. If there are no active leaks, don't waste your money on ultrasound, ozone, etc treatments to kill the mold -- a dead mold's toxins are just as toxic as a live one's. Healing Before focusing on elimination, have to support the liver, gut and kidneys, since those are essential to metabolizing and excreting the mycotoxins. See Neil Nathan's book, or Shoemaker's. It is important to do the milk thistle, Liver GI Detox or such first, else there won't be much elimination, no matter how much mycotoxins there are in the body. That means you'd also get a "false negative" on any urine tests. There are herbal and medical things one can do to help eliminate mycotoxins. Many folks would say that it's best to start on those after the patient is out of the contamination, certainly for powerful tools like Cholestyramine, which some folks become sensitized to if they're still inflamed from active mold exposure. Too much to say at this time of the night. But there are certainly youtube videos to help. If you're not sure that mold is a major part of your child's issues, then you can do genetic susceptibility testing (see Shomaker's DRB-DQ) testing. If you want to have a sense of how much your child may have absorbed, there's no direct measure. The best you can get is how much they are excreting. After they are able to excrete. That's the reason for step 1 in this section. So, after you do the first item in this list (getting the liver working well), have the child do a urine mycotoxin test from Great Plains Lab or Real Time Labs. . Neil Nathan's book gives other tips for making the test more likely to be positive, to show what's stored, and goes over the pros/cons of the two labs that do these tests. PS. Just FYI, here are some key mistakes I made: I didn't move out my son to a friend's house as early as I should have. I kept a lot of things at the start, not realizing the risks of cross-contamination (I'm a former refugee - it's hard for me to toss things), I appeased DH more (he really didn't want the hassle, and thought I was being extreme). We had our stuff in a POD outside our home, some apparently getting musty from the repeated condensation. We didn't get our "un-contaminated" parts of the home re-tested before moving things back in, and bought new mattresses before we knew all was healthy. We didn't fully follow Shoemaker's 3-phase serum testiing protocol (test before leaving, do 1 month of cholestyramine 4x daily, re-test after a month. Reduce cholestyramine. If you have to wait to re-enter home, enter home, re-test again just before return, and re-test 4 days after re-entry to see if you're tolerating the remediated home. We didn't do the 1-month test, to show us iif he was ready to reduce the dose. I didn't check my son's therapist's office and OT therapy room for mold. Both turned out to be highly contaminated and when he began doing both, he had a relapse. I didn't realize that inability to eat much, and nausea could b gastroparesis from mast cell activation (from mold) I expected my relatives to understand why I had to be so anal once we got serious about keeping DS away from mold. I was blind-sighted by their judgmental reaction, (while I was also pleasantly surprised by the understanding and caring from less close friends,.) there's lots else. Still, my son is definitely healthier and happier now. The process stinks, but knowledge is power. Good luck. It's been a month since you posted. please add a status update and ask more questions.
  5. Found the citation: Identifying targets for autoantibodies in CNS inflammation: Strategies and achievements April 2010Clinical and Experimental Neuroimmunology 1(2) DOI: 10.1111/j.1759-1961.2009.00006.x Edgar Mein, Tobias Derfuss, Christopher Linington
  6. I know this is old, but I'd love to see the article, but the link says I don't have permission. Can you please list the citation, so I can try to find it?
  7. Hi Mark, Did you already have treatment for the sphenoid sinusitis? For both my kids, an acute sinusitis flare of their chronic sinusitis was a major trigger for a severe PANS flare.... and the chronic sinusitis meant that any small cold immediately turned into acute sinusitis. However, the right antibiotics can still take care of a sphenoid infection; so it's certainly not that you have to have surgery. For DS#1, he was on a 3rd gen antibioticsfor months, and even after sinus and sleep apnea surgeries continued having this sinusitis and feeling exhausted. Then I took him to an ENT who strongly believes in culture-guided antibiotic therapy, he did an endoscopic exam, found some mucus far back, cultured it -- and found that it was mostly or completely resistant to all the Biaxin, Ceftin, even quinolone antibiotics we'd been using, but quite sensitive to lowly Augmentin, which he'd not had for years. Or perhaps even amoxicillin. A 7-day course of that antibiotic and my son felt SO much better. In contrast, with DS#2, we never found a magic antibiotic, so he'd get 50-70% better and then stall. What helped him were 4 courses of IVIG, after which colds no longer caused major flares. (My lay theory is that the foreign antibodies were better at recognizing and fighting the bugs he had than his own antibodies). However what seemed to really cure him of the sinusitis was treatment for tick-borne infections, for which he was on double antibiotics for a few months, including things like doxycycline and rifampin. He's now been off all antibiotics for 18 months (that was scary for me), and instead simply takes probiotics, VitD3 Co-Q10 and other vitamins, and some anti-inflammatory herbs (turmeric, quercetin....). DS#2 has had a few colds that have not turned into sinus infections. A mild flare with the last cold last winter (and that was a particularly nasty cold, as both I and his friend can attest).
  8. Let us know how if you find choreiform movements! And if you do, I suggest taking a video. Being able to show that helped me communicate with my kid's neurologist and the psychiatrist -- and at least once it got him a more thorough exam and more appropriate treatment.
  9. I've definitely seen this in my own son when he had a flare. For my son, it was pretty easy to check how well his brain to hand and finger planning and communication were working. It correlated really well with choreiform movements. (sometimes called piano-playing fingers), done as part of a Romberg's Test. How to check for that? Ask your kid to stand with their eyes closed and with all muscles getting the message to be outstretched, but having to rely on proprioception (the internal nerves that tell you where your body parts are in space, and which way gravity is pulling them) to stay vertical, with arms and fingers in place. So what you are asking your kid to do is stand straight with feet together, arms straight out, about shoulder width apart, fingers straight and spread out real wide. If you're doing this the first time, make it safe -- be physically close, or have them stand a half foot in front of a wall, just in case they start swaying soon after their eyes are closed. The goal is for them to stand like that for 30-40 sec or so, and see if by that point they're still steady, and their fingers stay straight. When my son was in a flare, within 5-10 seconds I would see his fingers wiggling irregularly, sometimes also his arms / shoulders moving to adjust his position. Sometimes you also see the body sway, the head and lips move. Note: Initially when I tried it on him, I hadn't expected that his control was as bad as it was -- I actually thought he was playing with me, swaying, grinning and opening his eyes on purpose to stop the test. He got so upset when I told him that that -- 'cause he WAS trying. I later realized that shutting his eyes tight may also have been adding a load to his brain's planning; that at times he may not have full control of his face when he's also working to keep upright and other things stretched. In this video of an evaluation on a kid with Sydenham's Chorea, you see this test done at 1:00, with the child seated, since he doesn't have the control to do it standing. And then after you can pay attention to the involuntary hand movements. So imagine cutting meat when you have such poor control. It's gotten better, but it helped for me to just say, "so this week it's better if I cut your meat?" He certainly took that over as soon as he felt he could trust himself! Good luck!
  10. Hi Fiddlegrl, welcome! This is a good forum to be part of. I'll chime in as well, for much of what you describe resonates, and I can share our experience on a few specific things you brought up. My DS19 has had the PANS Dx for ~ 4 years, after a sudden onset with very high anxiety, OCD, Very high CamKII, cognitive and neurological symptoms, separation anxiety, inability to do schoolwork, and more recently anorexia with feeling full quickly. He's quite a bit better, except for miserable water-triggered itching/hot/cold/tight sensations, and a chronic headache which is debilitating depending on sleep disruption. Possibly from: initially unrecognized tick-borne infections, chronic mold exposure. Increased susceptibility due to Ehlers-Danlos syndrome. I'm rarely active here now due to family issues & needing to get done triage/clean/dispose of stuff from our mold-contaminated former home(I wear wearing haz-mat suits, shower after....). You mention: "Feeling full quickly when I eat, which has resulted in dramatic weight loss". Been there and much better now! My tall DS19 had that last fall, and went from >130# to 114# (at 5'11"), so it was scary. along with a dramatic worsening of his anxiety, executive function, memory, mental resilience. High IgE >1500 (normal <150). We're pretty sure it was triggered by unknown mold exposures from classes begun in August (verified by ERMIs). Fortunately someone suggested he be tested for mast-cell activation syndrome (MCAS), and his allergist concurred, and another MD suggested that the rapid satiety and long fullness are symptoms of gastroparesis and MCAS. The first line treatments for MCAS are antihistamines (H1 inhibitors) & H2 inhibitors (antacids like ranitidine, Pepcid). If those don't help, add montelukast sodium (Singulair, a leukotriene inhibitor) . Third line are Gastrocrom (cromolyn) before meals, a non-absorbed mast-cell stabilizer that quiets the GI system mucosa, and/or Ketotifen, which is a systemic mast-cell stabilizer. The last two + stopping mold exposures (see below) have been magic for my son! Less than 2 weeks after starting ketotifen (and after stopping mold exposures) he had some days when he could eat; by 4 weeks he was eating full meals, gaining weight. At this point we do gastrocrom only before high-histamine meals or leftovers. (should do low histamine diet -- soon. sigh.) I've now done the ERMI test multiple times on my own and via a certified environmental hygienist (CIH) who specializes in patients with mold-triggered symptoms. It's much more reliable than air testing, assuming it's done well. What's great about ERMI? By wiping rarely-dusted surfaces gives you sample the mold that's settled over weeks or months, rather than what happens to be air-borne during a 5-30 min test. More importantly, an ERMI is based on PCR (DNA analysis) of mold fragments as well as live spores. There's usually hundreds of times more mold hyphae fragments than spores, and <0.3 micron fragments get deep into our lungs' alveoli (and thus our blood). And the mold fragments are covered in the bio-warfare agents we know as mycotoxins, so they cause as many issues whether mold is dead or alive. How do you do a good ERMI sample? Generally I test places w/o carpets, so I use Swiffer wipes. I use the CIH's best practices: Supplies: a new, unopened box of unscented Swiffer wipes, 1 Qt & 1 Gal baggies, and surgical gloves. I wash my hands and put on surgical gloves. I pre-load a set of ziploc baggies -- one swiffer wipe each and I add 3-4" of masking or scotch tape for easy labeling. I prep those into a 1 gal bag, with gloves & a thin permanent marker, and another 1 gal baggie rolled up to collect the dust sample bags. When it comes time to do samples, first I look for what's not been dusted recently. Then I label a baggie, put on gloves, and fold the swiffer wipe to expose a 1/6 section of the fuzzy side, then wipe lightly, turn to expose a clean part, move elsewhere and repeat till all fuzzy parts are full. I wipe high and low: tops of picture frames, tops of a lamp, fans, tops of baseboards, outlets, within toy boxes, under beds or fridge, etc. When gray I re-fold, put into the labeled baggie, and eventually download from Mycometrics or EnviroBiomics their order form, "Chain of Custody" form, number the samples, ensure the labels match the description on the form, and send off. The CIH recommends to do LR/K as one sample and bedroom as another, or in a multi-level home, to do one per level. NB: If you find actual mold, don't wipe that -- instead get a clean piece of scotch tape, press a piece to that, and tape to a baggie. You didn't ask about this, but I found it incredibly validating to do urine mycotoxin testing on my son. This measures the mycotoxins eliminated through urine, and so indirectly the load within the body. The two key companies that do this are Great Plains Lab (using the very precise LC-MS/MS) and Real Time Lab (over a decade of experience, older technology but broader set of mycotoxins). Neither is cheap. However I learned that my son's Ochratoxin A levels were 20x their upper threshold of normal, plus he had elevated levels of aflatoxins, gliotoxins, stachybotrys-related toxins, etc. This confirmed that we were on the right path. Repeated tests showed that he wasn't clearing those well on his own, which is why even after we left our mold-contaminated home, new sources of stachybotrys sent him into a bad downward spiral. And that it really was important to keep him from water-damage mold exposures, reduce sources of inflammation, and to improve his body's elimination. I hope that helps. Keep writing questions. It helps us to be able to share our hard-won knowledge, to make it a bit easier for others. Wisdom_seeker
  11. From the NIH website on Ehlers Danlos Syndrome: There are lots of genetic mutations (known and unknown) that result in connective tissue issues, so whether a kid gets the Dx depends on whether it's on the doctors' radars, and how severe the symptoms -- and the severity will depend on the kid's genetic mutation(s) and the child's activities --like gymnastics, soccer, or simply showing-off double-jointedness). My son with PANS also has hEDS, and probably I do as well. EDS is supposed to be quite rare, with a 1:5,000-10,000 incidence, but it's suspiciously common among PANS patients. The Stanford PANS clinic says it's not uncommon in their clientele. I subscribe to the theory that EDS likely weakens gut integrity as well as blood-brain-barrier integrity, so perhaps antibodies to strep or mycotoxin fragments may more easily get into the brain. And bacterial overgrowth or the disruption to the gut microbiome (from inflammatory food and antibiotics) may be enough to let food and bacterial fragments in to get tagged as invaders and create an inflammatory state which ... always weakens blood-brain integrity. As far as stomach pain, apparently it's very common in PANS. DS19 developed one variant called mast cell activation in his stomach and gut, making him go from hungry to bloated within a few bites. Not good for a teen boy. Fortunately he's gaining weight again.
  12. Bob, are you still looking for add'l PANS datasets to include in a validation set? And as far as the p-value above, did that include some multiple-comparisons correction? (I know that's a not an obvious process, it's easy to over-correct if you do it blindly).
  13. You'd written a few years ago that your daughter was just getting a SPECT scan. Did you find the SPECT results useful, either for treatment or to get approval for therapy from insurance? We're trying to decide between subjecting my son to the stress of a SPECT vs. trying to get into Chugani's clinic for his special PET scan for PANS kids, so if you know anything about that, I'd appreciate that info as well.

  14. Hi Mama2Alex, This is a very clear photo of full-width striae, thank you for posting it. Since your kid has such a rash, can you please describe it a bit more. You describe it as a rash. My question is: Is the red area a bit indented, as if the skin is thinner, but not flat inside -- is it like the stretch marks we got from pregnancy? Or is it what we normally think of as a rash -- composed of tiny raised bumps? Second, I wonder what the origin of the photo itself is? Is it from the blog's author, I wonder? Since my kid has striae like this on his back (though smaller) I had hoped to bring this photo to my son's pediatrician, to show that my son's striae may not be simply adolescent stretch marks. She's open-minded, but would like some proof. However this photo is not from the original article. (https://wwwnc.cdc.gov/eid/article/22/3/15-0269_article) And, surprisingly, the article doesn't even mention striae among the symptoms. So, if anyone knows of any published photos published by MDs or appearing in journal articles, I'd be very grateful to see those! WS
  15. I'm not sure if you were addressing this post to Dr. Rao, and that's why no replies? If not, I'll put in my 2 cents, (as a non-MD). My son's immunologist had started him on Valtrex and antibiotics when he saw high titres for EBV, HHV6, and mycoplasma, as well as ibuprofen and gabapentin (Neurontin) as anti-infalmmatory & neuroprotective. DS had kept getting monthly infections during this entire time, with a flare with each infection, so it was hard to say that anything was helping significantly. And it turns out that DS also had undiagnosed babesia and likely Lyme, so the antibiotics and antivirals were likely necessary but not sufficient. From what I've read & heard, it looks like IVIG will "stick" better if you are able to track down and treat all infections before giving IVIG. Without that the inflammation and BBB disruptions will just continue. Also, some folks (like llm) had bad experiences with IVIG when her DS had undiagnosed Lyme + co-i. Her DS wound up with a very strong herx reaction after the IVIG ( FWIW mine did not, but he also improved much more after IVIG #2, about a month after we began treating the babesia. BTW, we've at times gone for a consult to an out-of-network doctor, but then took those recommendations and lab slips to our open-minded in-network doctor, who generally was willing to write those lab orders himself, and this way they were covered better. So we only had to pay for the consults, but at least not as much co-pays for the tests and treatments.
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