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wisdom_seeker last won the day on May 20 2020

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    SF Bay Area, CA
  • Interests
    MCAS, PANS, PANDAS, mycotoxins

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  1. My PANS kid (DS21) and I are very happy that he's had the COVID vaccine series. He's just had both Pfizer shots and did OK. Unpleasant headache and some fatigue for ~36 hours starting the day after the second shot, as well as a bad arm ache. He's more sensitive to pain due to chronic pain. I treated it with NSAID. FWIW, we timed his vaccine jabs to be 2 days before his regular anti-MCAS mast-cell-stabilizing infusions. Those include hydration plus meds like Benadryl and an IV NSAID. It was somewhat scary, but I would do it again in a heartbeat. For us is a huge feeling of relief, because the risk of getting COVID is still high with the more infectious variants still popping up (see the SA, Brazil and India strains, ones that haven't really had time to spread in the US yet). My thinking is that a COVID vaccine flare is likely to be way less than the flare from COVID itself! My (obsessively) careful ex and his autoimmune gf both got COVID in Oregon this spring, a few months after they'd taken a long Airbnb vacation from California and its surge. His gf's adult daughter was high-risk as well, and they all tried to be VERY careful to avoid infection. Unfortunately even with the California or UK strains, the aerosol dispersion of the virus is efficient enough and the infectiousness high enough that the old CDC guidelines of 2-layer cotton masks and surgical masks weren't good enough. And those strains are still better than the Brazil, So Africa or India strains. So I am VERY happy that if my DS were to get infected come this summer or fall, he's likely to have a mild case. PANS kids are different. My PANS kid (DS21) used to flare with every infection, no matter how small, as well as with intense cognitive or emotional stress. He stopped flaring with infections after we gave four cycles of IVIG and treated his tick-borne infections. I'd not been giving him flu shots since PANS onset, but he was too ill for school, nobody in our house was attending school, so we figured the risk was low. Still, *I* got influenza three years ago, and that sure was scary. I went to urgent care, got an antiviral, so did he as prophylaxis, we both masked indoors, I wore gloves and washed my stuff as soon as I brought them to the kitchen -- and he stayed healthy, or asymptomatic. Unlike the flu vaccine, I would approve the COVID vaccine even if he were still flaring now with infections. I have that much respect for the virus that causes COVID and what it can do to people with wonky immune systems. However I would likely give NSAIDs right after w/o waiting for side effects, and have steroids ready. Above all, I would do what I didn't have access to then -- consult an integrative MD to see how to best guide the immune system to make immunity w/o shifting into overdrive. PANS is hard on the body. So is COVID. Good luck with your decision. If the decisions were obvious, none of us would have to post, right? hugs, WS
  2. How did you find that there's a mitochondrial deficiency? Are there valid commercial tests? I have heard more people mention this as a cause of fatigue or result of mold, abx or such, but so far nobody suggested getting my kid tested. Naively I'd always assumed that it's often local, not systemic -- that there could be deficiencies, say in the brain or gut, that wouldn't show up on a blood test.
  3. Treat it as a real symptom unless proven otherwise -- a response to something biological within the skin. How to test? Try a couple of adequately high doses of an old antihistamine like Diphenhydramine (Benadryl). (in the AM, since kids often get more alert rather than more sleepy). If that works and and you prefer you can later switch to natural antihistamines, but the Benadryl is a strong H1 blocker, so if the itching gets better within an hour or two, you have your answer. My son developed a variant of allergic response called mast cell activation syndrome (MCAS) as part of his PANS/AE. When he's in a flare those symptoms flare as well, for him including gastroparesis (rapid satiety / nausea, due to the mast cell degranulation response to eating). Relatives thought he had developed anorexia as a response to the lack of control he had. Hah! The moral of the story is treat symptoms as real. As far as liver, I'm all for supporting the liver; it's got a really essential job. However a liver impaired enough to cause constant all-over itching should have other signs -- like jaundice (yellowing of eyes or skin), and/or an MD could feel the liver be enlarged. (I'm not an MD - so this is info, and encouragement to check out the itching and liver qs by talking to her MD).
  4. I spent a couple of months trying to push my teen to school because the experts Dx'd "school avoidance due to anxiety". They provided extra supports, but pushed me to take him even when he had a mild infection and a flare due to that. Worst idea anyone had. It was torture for him, torture for me. Not only did it cause his brain to be even more in fight and flight, it made him (understandably) less trusting that I'm "on his side". If she's worse the days following a stressor, even if she "held it in", it means that she had to borrow emotional energy from the future when she was scraping bottom, at ruthless "payday lender" rates. (My son thinks of it as 2:1 or 3:1 conversion when borrowing from tomorrow,;4:1 or even more if he has to dig even deeper and borrow from the succeeding days). So he wound up going to school for a part day one day, and then was absolutely wiped out for 2-3 days after. Trust your gut. I didn't initially -- thanks to well-meaning extended family, teachers and misguided psychiatrist. But think about it this way: Do you think any kid likes being anxious, irritable, out of control, with folks not understanding you? With others coaxing, commanding, maybe making fun of you? Or threatening "consequences"? If she could be resilient and her normal self, she absolutely would be. Try to remember when you have the "sickness behaviors" of influenza or mono -- malaise, irritability, fatigue, being non-sociable, low mood, no motivation. Are you being manipulative then? These "sickness behaviors" are hard-wired. You're miserable due to inflammatory cytokines from a primitive immune reaction in your body and brain, designed to get you to stay in bed, do nothing, so your body can heal. What I had to learn with my kid is that the severity of his flare had no relationship to how severe the cold symptoms were! In fact I remember remarking that soon after his onset, the colds were shorter, more minor than before. My understanding is that the immune response had gotten derailed -- so instead of making the type of inflammatory cytokines that cause a runny nose, his body was busy making the ones that crossed into his brain and made his brain flare. You are providing an absolutely necessary haven in the storm. She doesn't want to be in the storm. And certainly not in a relative's home while she's in the storm. Tell your friends if they want to help, you'd love their help -- but in ways that don't add stress to her brain. Examples: could you send them your grocery list? a list of herbal supplements to track down and get, send a link to a recipe that would make some (frozen) comfort meals for your family, for a bad day. Having a friend come do your laundry, or help fold laundry with you, or garden or whaterver, could be wonderful -- as long as you (and your daughter) knew they wouldn't judge your daughter -- or your parenting. (BTW, I now have a friend like that living with me, and it's so freeing, so wonderful for all of us. How does she know not to judge? Well, she grew up with similar judgment, from family and then husband. She never had any clue what was wrong but "laziness, anxiety", and MDs chalked up all symptoms to anxiety/depression (so easy). She learned to hide it super well due to all this awful judgment -- it's only after she moved in with me that I realized she had these waves of fatigue, brain fog, sweating, hard breathing -- and that they could start suddenly, after bending or reaching, or gluten. She never remembered what triggered it -- due to the wave of brain fog, anxiety and embarrassment (duh). Now we're a good support for one another, together figuring out her illness and my son's.) Good luck! You can always find understanding folks here! PS. BTW, for my kid, steroids, IVIG is what helped my kid most -- and then treatment for MCAS. Had we had good treatment early, good antibiotics against strep or sinus infections treatment might have been enough. Or, getting him away from mold within our home (sigh). But he never created antibodies against strep, and the mold was within our walls, and I was the only one who ever smelled it. PPS. At least in NZ you don't have to worry about COVID-19, unlike our Trump-forsaken-country, now at even higher COVID-19 rates than in spring. PPPS. Neurologists often don't get AE/PANS; there are a few influential neurologists who for the last 20 years really resented this intrusion into "their turf" of Tourette's. So if you're told that it's just tics, OCD, or manipulation, don't be discouraged -- simply don't believe them.
  5. Covid-19 is definitely inflammatory, so that makes a lot of sense. And there does seem to be some delayed inflammatory response in kids -- such as the Kawasaki-like syndrome seen (very rarely) in kids post-COVID-19 is considered to be a delayed inflammatory response. Early on, (pre- steroids + IVIGs), my kiddo used to get a flare with every single infection, no matter how minor. I'd be surprised that that would kick up other specific titres -- are you talking about general elevation in IgGs, or in abs against other specific things? You certainly summarized the key info -- that it's a relatively mild flare, and, especially that last year he'd weathered many other inflammatory insults last year. Still, because any such inflammation affects the blood-brain barrier, I've learned during any PANS flares to back off on other inflammatory stresses (including arguments), and focus on anti-inflammatory things we can control, from antioxidants and NSAIDs to exercise (if he lets me) to fun and friends (harder during the pandemic, I know). I'm curious, since y'all have COVID antibodies, has that made it easier for him to get together with friends?
  6. 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 PS. I'm a night owl on PST, in the SF Bay Area. Send a DM.
  7. 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. )
  8. 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.
  9. 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.
  10. 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
  11. 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?
  12. 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).
  13. 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.
  14. 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!
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