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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. 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
  2. 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.
  3. 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).
  4. 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.

  5. 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
  6. 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.
  7. 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?
  8. 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
  9. 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.
  10. 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?
  11. 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.
  12. (sorry- I messed up the quote). Plum99: "That part I couldn't imagine anyone fighting to be involved with." What part? And yes, I agree that it's the type of comprehensive PANS treatment center that all our kids deserve. I wish that my son had been considered eligible, but he did too good a job hiding his OCD (he thought we'd consider him crazy). And maybe he was too old, ... and we weren't sure if the symptoms began in Jan or in Aug 2015. It was a huge disappointment when we didn't get in despite the neurologist's and psychiatrist's recommendation. I think they avoid giving out their eligibility criteria to prevent families from gaming the system. Can't say I blame them. You can invalidate an otherwise excellent research trial by having too varied a population. But I still wish they also had an open treatment clinic, not just the research clinic.
  13. The Repreeve website that Sheila linked to now returns a 404 Error. What I did find is this, on the Latitudes website. http://latitudes.org/can-repreeve-help-nystagmus-tics/ Which links to the company that makes Repreeve. http://matertechnologies.com/ I have no personal experience; our PANS kid doesn't have tics.
  14. We had success with hookworm for DS9, who used to get bacterial sinusitis with each viral infection, and this seemed to regulate his immune system so that a cold could stay just a cold. My older son also got 25 hookworm at the time he had PANS, and for him it seemed to help a bit, but what he really needed was sleep apnea surgery. While he had sleep apnea (~27 arousals/hr) then he could not get rid of a chronic sinus infection. Without the deep sleep, his body was not effective at clearing the infection and then turning off the immune system, and his immune system just stayed in overdrive. So not a panacea, but we did find it helpful. Do ask to see the lab results for the donor, to make sure that they don't carry any bugs you don't want. A reputable organization will be happy to supply that. The hookworm larvae are cleaned by multiple steps (washed with multiple antibiotics, maybe alcohol... I don't remember). It's a process with some of the same risks and safeguards as IVIG or stool transplants, but with a less-established peer-reviewed process. So getting some verification that the larvae donor is safe is simply a prudent step.
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