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MomWithOCDSon

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Everything posted by MomWithOCDSon

  1. This is purely anecdotal, and I have no medical training, BUT...it has been our experience (and I've seen it with some other families, as well, for whom strep was a long-term factor and not quickly caught and eliminated) that a single "round" of any antibiotic is unlikely to knock it out entirely. Whether it's because strep can cloak itself in biofilms and propogate in sort of a stealth mode, undetected, or whether it's because it engages in some "molecular mimicry" (as described by Dr. Cunningham), exchanging genetic material within the bodies of susceptible populations, it seems as though i
  2. Your situation sounds quite similar to mine and my son's. We've been past it now for a number of years, so there may be some newer/better protocols out there (as momonmission mentioned above), but I will tell you what worked for us. I also believe I had PANDAs as a kid and took it into my early adult life with me; then my son developed it but we couldn't get a proper diagnosis for years; he was 3 when the ear infections and anxious behaviors began, and we limped along with Band-Aid fixes and ineffective treatments until he went off the deep end at age 12. That's when we found PANDAs and rea
  3. tsh_73 -- Sorry for what you're going through. Unfortunately, yes, I think many of us -- and many of our kids -- were dealing with PANDAs for years before a diagnosis of such, and the impacts are wide-ranging and probably unnecessarily prolonged due to a lack of recognition in the general medical community. It sucks. As for the most proximate and PANDAs-literate doctor to you, I imagine Dr. Latimer (DC area, I believe) is probably it. It will take a while to get an appointment, however, and I don't know what her insurance acceptance situation is currently. Many professionals in t
  4. This popped into my social media feed today, and I thought it was very interesting. http://mentalfloss.com/article/65710/9-nervy-facts-about-vagus-nerve
  5. Hope -- We didn't experience this particular manifestation of the PANDAS "aftershock" either, but I can see how it might happen this way. I'm betting, like me, you attribute much of his braggadocio and narcissism to some deep-seated insecurities he's dealing with, likely at least in part to his health battle and him having a pretty good idea of how far behind he's fallen both academically and socially as a result. We, too, battled with how best to handle the emergence of a healthy teenager for whom truly age-appropriate behavior had been outside reach for a number of years. But I d
  6. Yes, Dr. Murphy has actually written the definitive paper on PANDAS kids and SSRI's, advocating that lower doses are generally appropriate for them, if SSRIs are applied at all. She'll know more about the "why's" behind that, but it's probably good advice for all kids, generally. One of Dr. Murphy's former colleagues, Dr. Eric Storch (I believe he even co-authored that paper, or has co-authored other papers with Dr. Murphy) taught a session at an IOCDF (International Obsessive Compulsive Disorder Foundation) conference several years ago for therapists, psychs and other practitioners work
  7. I can offer some of our experience, which sounds very similar to yours. My DS was diagnosed with "regular OCD" at 6, so, yes, an anxiety disorder; his just happened to manifest in a hand-washing compulsion which he used as a coping behavior, particularly at transitions. I found references to PANDAS at the time and knew my DS had been exposed to strep (though he didn't "catch" it, in the classic sense), but I couldn't get any of his caregivers to take me or PANDAS seriously at the time. We got him some therapy and he more or less "bounced back" within a couple of months. His second
  8. Beenthere -- How interesting, the change in presentations! In our cases (both mine and my DS's), it's gone in the exact opposite direction! I was totally classically asymptomatic for strep as a kid, as was my DS: no fever, no sore throat, and no positive swab. But behavioral symptoms abounded for both of us, and strep titers for my DS were extremely high when finally tested (mine were never tested since no one had a clue about PANDAs when I was growing up). Now, as an adult, I get classic strep (high fever, horrid swollen throat), and though my DS has yet to "catch" strep in his
  9. I believe Dr. Latimer is in the DC area and is well known for treating PANDAS. Though I also know her practice is quite busy and you may have to wait a while to be seen. Perhaps one of the preceding suggestions will be fruitful for you in the meantime, and you could also try the thread called "Doctors Who've Helped Us" among the Pinned Threads at the top of this PANDAS forum. Should you find you're put in the position of waiting some time for an opening appointment with one of the truly PANDAS-literate doctors, I would try an appeal to his regular pediatrician who's hopefully known him
  10. I like "The Explosive Child," also, and while it's not specific to PANDAS, necessarily, one of the authors has worked with Dr. Swedo in her research at NIMH, so he's at least familiar with PANDAS presentations. I'm not sure it matters whether the disrespectful behavior is uncontrollable because of PANDAS, or if it's uncontrollable because your kid is so far out of his self-control that he can't stop himself from blurting out rude words or making rude gestures or whatever. I mean, yes, PANDAS can definitely mess with your executive functioning and make it more difficult to display age-app
  11. Supermom -- What I mean is that, anecdotally anyway, it generally seems that the younger the kid when the reaction to strep (PANDAS) is caught and treated, the more responsive they tend to be to treatment, and therefore the better chance that, treated quickly and thoroughly, it won't become a "chronic case." And by chronic, I mean a case where the behaviors (tics, OCD, separation anxiety) get to a point where they won't relent, let alone dissipate entirely, and the kid can become reactive not just to that primary trigger (strep) but also to other microbes and/or allergens. Again, pretty
  12. Sachromyces boulardi (or "sach b," sold in pharmacies, though usually behind the counter, under the brand name "Florastor") is a "beneficial yeast" that is supposed to help crowd out and kill problematic, prolific yeasts, like candida. You can also get it in a less-expensive brand (Jarrow) at most Whole Foods or Vitamin Shoppe locations (or Vitamin Shoppe on line). There are also prescriptions for yeast overgrowth (rather common in women, anyway) like Nystatin or Diflucan, that you can get from your doctor. I know they can test for it, but I'm not sure what that testing consists of? For so
  13. Because you've already had instances in which the tics were temporally associated with a strep infection, I would be alert because sometimes the behaviors can be "the canary in the coal mine." You may see them before, or even instead of, classic strep symptoms. There are anecdotal reports of kids who find themselves in a carrier state, without active infection but reactive behaviorally, as well as kids who react to being exposed to strep, even though they don't "catch" it. The temporal relationship between date of infection and behavior onset can also change with repeated episodes; also, if
  14. I'm so sorry, Lordchallen. That all sounds awful. But, unfortunately, these sorts of "rages" appear to be part and parcel of some kids' PANDAS behavior set. Usually brought on by severe and unrelenting frustration, knowing that their behavior isn't what it once was, isn't what it should be with respect to age-appropriateness, but to a large extent out of their control because their brains are so disordered currently, their executive functioning so challenged. As for why those behaviors seem to get worse or more extreme in the evening as compared to the morning? I had a psychologist gi
  15. I have to agree with bobh, though I'm sure that's not what you want to hear. I don't think that PANDAS has been recognized long enough or consistently enough, or treated properly long enough or consistently enough, to have any true, longitudinal statistics with respect to "100% cure" or relapse probability. On top of which, there isn't even a well-defined or implemented treatment protocol that works for all cases, all of the time. There are practitioners who will tell you that antibiotics do not work long-term; that IVIG is the only way to "cure" the condition; then there are those who beli
  16. Hi Maryangela -- We're in the Chicago area and I'm unaware of any local face-to-face support groups, though, admittedly, I'm not active in the Facebook group. I'm guessing that between work, family and the additional demands PANDAS puts on all of us, finding the opportunity to meet up on a regular basis is a tough one. That's why I check in here at least a couple of times each week...I can do it when I can steal a moment from all the other stuff! ;-) We did once have a day-long "retreat" at a motel outside Indy that a bunch of us Midwestern families were able to attend; there were
  17. I think that probiotic supplementation can be almost as individual as antibiotic treatment. Some people don't respond well to some strains, others respond especially well to others. And as for how much? I think that's individual, too. When my DS was on antibiotics, we gradually brought him up to a probiotic regimen that was right around 200 billion per day. Any more and he got gassy or bloated and uncomfortable, but at about 200 billion of a variety of strains (we did Culturelle which is lactobacillus gg, sach b and a high-potency mixed strain via Renew Life), his gut seemed to do well an
  18. Lordchallen -- I think the rotation that's being referred to here is with respect to probiotics, rather than antibiotics. Meanwhile, giving different versions/strains in the interest of keeping the gut flora varied and strong. As for rotating antibiotics, I'm not sure if there are some protocols that actually call for rotation as opposed to "pulsing," but I believe these specialized antibiotic protocols are most common to Lyme treatment, rather than PANDAS in a general sense. You might search the forum for "Lyme antibiotics," and that may render some responses along those lines.
  19. Allergies definitely constitute an "immune event," so the immune reaction and its accompanying inflammation could definitely contribute to a PANs flare. I would look into other triggers as well, however, as I don't recall having heard of a "full blown psychosis" reaction to only seasonal allergies. Perhaps she's been exposed to other bacterial or viral invaders, as well?
  20. The only real "PANDAS doc" in the Chicago area is Dr. Kovacevic (Dr. K.); I believe he has some experience with adult patients, though he is also, technically, a pediatrician. Unfortunately, there is really no one else up here that I've been able to find who takes the diagnosis seriously or is willing to treat it specifically. Maybe someone else will chime in with some more recent luck in this regard. My DS is 21 now and is no longer "strep-reactive," so his official PANDAS treatment is over. He has located, however, a psych who's familiar with PANDAS whom he checks in with periodicall
  21. Mountainmom -- is your kid still on an antibiotic regimen? Do you use other methods (supplements, OTC meds, etc.) for helping combat the inflammation from the flare? Yes, kids DO get better! Mine did. But, unfortunately, even though the symptoms and behaviors may crop up virtually overnight, the healing is rarely, if ever, that fast. It is a matter of time as well as a matter of treatment. If your son is not currently taking antibiotics, get him some. If he's taking them but you see no support or improvement via them, talk to the doctor(s) about switching them up. Unfortunately
  22. Every SSRI works differently to some degree, and that's why some work for some people but not for others. Via Wikipedia, you can pretty easily find the pharmacology of most drugs; here's the page for Luvox (Fluvoxamine) https://en.wikipedia.org/wiki/Fluvoxamine If you pay attention to those "binding receptor sites" ("Binding Profile"), you'll see the brain receptor sites for which any given SSRI is designed to impact. My guess would be that your alcohol intake also impacts those receptor sites, potentially over-burdening or "frying" them when paired with the Luvox intake as wel
  23. To a great extent, the medical science is beyond me. But as a recall, the actual magnitude of the titer count (whether anti-dnase-b or ASO) matters as some "highs" are, in the end, essentially statistically insignificant while others are truly indicative of something amiss. My recollection is that the anti-dnase-b titer test measures a strep infection exposure that was at least 4 to 6 weeks in the past; if your son's exposure was 3+ months ago, then the fact that his titer level is still "high" by his doctor's standards would suggest that, potentially, some molecular mimicry has taken pl
  24. Good luck, Sascha! Yes, it sounds to me as though this doctor is looking for an underlying infection or, at a minimum, looking to rule out underlying infections out. I think this is a good place to start; it's where many of us started, as well. But you're also right in that sometimes these blood tests do not result in any definitive finding that might explain your symptoms or clearly point toward PANDAS/PANs. At that point, the MRI and/or the spinal tap might become necessary as they can reveal issues that the blood tests may not. I think the doctor is inquiring as to whether med
  25. I think Trileptal is an anti-seizure med, also. If you want to hear more experiences with Lamictal, you might use it as a search term on the forum. There were several families, including ours, that used it for a period with success back "in the old days." I'm thinking of Nicklemama and RNMom, for a couple, though I don't think they're active here any longer. Hang in there!
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