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wisdom_seeker

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wisdom_seeker last won the day on April 13 2018

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    SF Bay Area, California
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    PANS, PANDAS

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  1. 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).
  2. 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.
  3. 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!
  4. 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
  5. 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.
  6. 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).
  7. 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.

  8. 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
  9. 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.
  10. IHow could one start a babesia subgroup? I would love to, for this appears to be the key infection driving my DS's PANS, and treatment seems to require more simultaneous things than strep-triggered PANDAS. Much like what you're doing. BTW, my DS17 had his 2nd IVIG at the end of november, and had started the babesia Tx in Nov. He's improved quite a bit since he began IVIG on 9/28/16. At least 20-25%. The last few weeks are the best he's been since he developed PANS. Don't know how much was IVIG and how much the babs tx. (he's had to stop the alinia - kept giving him diarrhea), but we continue the Malarone. What made you add glutathione? Or test for it, if you're supplementing bec of a test?
  11. Thanks. I didn't try this one, but we'll see his doctor next week and I'll ask. In the meanwhile she said to hold off on the Alinia and increase probiotics, and that took care of the stomach issues immediately. WS
  12. Hi all, My DS was prescribed Malarone and Alinia for babeisosis. After I added Alinia he developed gassiness & diarrhea. I stopped the Alinia and just re-tried it with the same effect. Any suggestions besides probiotics? ( We're already doing 30-50 B/day) I've heard there are herbal alternatives, but I don't know how effective those are. So if the babesiosis is what is / are underlying the PANS, I don't want to lose the best Tx due to side effects.
  13. My DS17 just finished HD IVIG (+solumedrol). Just as in the first cycle, by the 3rd day he developed painful pressure on his chest. He describes it as rubber bands keeping his ribs from expanding. But he puts his hand on his sternum and winces as if with gastric reflux, and says it "feels like if he's not careful he's going to vomit the air he'd breathed in". Could this be from edema? I am wondering because when I pressed in the skin near his ankles, there was a blanched thumb-print for a couple of seconds. Should i be concerned about that? The other IVIG side effects are: metallic taste in his mouth (? from heparin) -- so lots of fluids taste off pain all over gassiness (burping) He's had mild diarrhea ~ 2 wks, since starting Malarone + Alinina for babesia, and is sick of fluids post-IVIG, so tonight I'd recommended salty foods to reduce fluid loss. But if the issue was actually edema, did I make things worse?
  14. How uncomfortable! Has it gotten an better yet, since tics tend to morph to other tics? Could be a tic, or could be from the stimulation that results from the contractions of all the pelvic and thigh muscles involved in your tic. Some women are able to get an orgasm from some Yoga positions, or the stimulation of bike riding, or voluntary thigh movements. However, since feels like a micro-orgasm, it might simply be what you suppose -- the vaginal contractions that are part of your complex tic.
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