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Everything posted by wisdom_seeker

  1. 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.
  2. 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
  3. 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 scrap
  4. 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
  5. Oh do I understand the stuck and pissed, and $$$ stressed and tired. If you want to talk over what you've already done and seen, and brainstorm, give me a call. I'm not an environmental hygienist, but I've unfortunately dealt with hidden sources. And as the CIH I work with repeatedly told me, "an outlet or hairline crack in the drywall is like a highway" and the killer thing is that "every time you change air pressure, say by closing a door, it forces mold fragments & mycotoxins out through those gaps". So if I can help with the detective work, I will. Where are you located
  6. TLDR: What auto-antibodies have you seen in PANS kids that insurance didn't dismiss? We'd like a list of antibody tests or other evidence that can help get PEX authorized for a non-PANDAS kid. Details: My DS20 is pretty disabled due to MCAS and PANS symptoms, and his MD really wants to reboot his immune system due to his very high levels of auto-antibodies and dysregulated immune system. Because of his persistent high mycotoxins and persistently high IgEs, treatment with PEX --> IVIG + Rituximab makes more sense than IVIG -> Rituximab to us and at least some of
  7. Has anyone done CellTrend testing for auto-antibodies? This test was developed for POTS and ME/CFS, but surprisingly my son tested high positive for over half the 11 auto-antibodies in the panel. I'm treating this as very meaningful for likely AE. But would our insurance agree and pay for IVIG or PEX, based on a research test from Germany? Still it's enough for us to want to get serious about getting evidence to justify IVIG or PEX (both to us, DS20 himself, and insurance companies). However, years ago we'd spent $$$ for the Cunningham panel and insurance completely discou
  8. 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 in
  9. 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
  10. 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?
  11. 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
  12. 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.
  13. 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 the
  14. 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 depen
  15. 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 pat
  16. 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).
  17. 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.

  18. 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)
  19. 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 antib
  20. 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 w
  21. 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
  22. 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.
  23. 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: metal
  24. 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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