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Everything posted by Worried_Dad

  1. Oh, EA... this truly sucks. And you've asked the question that haunts every parent on this forum. My son had symptoms very similar to yours: started with migratory joint pain, muscle weakness, difficulty walking a few weeks after a high fever (104). Those can certainly align with Lyme, but they're also pretty classic symptoms of acute rheumatic fever. Six weeks later, our son's seizure-like chorea episodes began (exactly the latency described for Sydenham's chorea). To us laypeople, it seems like any doc with common sense would connect some dots and say "wow, that fever must have something to do with the emergence of all of these strange symptoms." Like your experience, our local specialists discounted the symptoms (ongoing fever spikes, elevated ANA and RF, elevated ASO) that didn't fit their comfort-zone diagnosis. And - like you - we had the psychologists telling us "this isn't primarily a psychiatric problem, you need to see a neurologist" and the neurologists dismissing that with "it's a psychogenic movement disorder... or OCD... or Tourette's... but it's not medical." (Not medical? Mental illness is still "medical" anyway, isn't it?) So why do respected medical specialists ignore what seem like blatant clues and refuse to see what appears obvious to us poor patients? I don't know. Are they so specialized that they can't process info that doesn't clearly fit inside their narrow diagnostic boundaries? Are they afraid of making a mistake on "edge cases" that cross disciplines, so they refer these cases elsewhere? Are they afraid of litigation if they step outside their "specialty box"? Wish I understood why this happens, so I could gain insight into how best to approach a new doc in a way that maximizes the chances that they will actually help my son. Wish I could share that secret with everybody on here. It's so depressing to wait months for a specialist appointment, only to realize in the first 5 minutes that they're not going to offer anything except another referral. Thank goodness for the heroes like Dr. K, L, T, B, C, and all those other letters. They're willing to listen, to learn new lessons from each patient, and to try new treatments if the old ones aren't working. Without them, I don't know if I'd have any faith left in our healthcare system. Now that you have those records, you're armed with fresh ammo! The heart issue you mentioned could certainly fit into the post-strep ARF/SC/PANDAS spectrum, or some other nasty PITAND pathogen, as could the other issues documented in your case history. Knowledge is power, and I have no doubt you can use this power to get some answers!!!
  2. On behalf of the dads, I apologize to any PANDAS mom who's been "abdondoned on an island" knowing that something is terribly wrong but not getting support from your spouse. That sucks! I think you're right: often, dads don't spend as many hours with the children on a daily basis and may be slow to accept the cruel reality of this disorder. In our case, both my wife and I knew something was terribly wrong because the change was so dramatic, especially on the 3 days where our son had "exorcist explosions" of symptoms. We never doubted, despite the continued dismissals of local docs. (Okay... a few times, we were pretty despondent and baffled by the docs' utter certainty that the fevers, joint pain, etc., were irrelevant and we started doubting our own sanity.) Our middle son's symptoms so far are mild: slight vocal tic, mild OCD, anxiety, enuresis. Nothing like his brother's overnight explosions. In this case - believe it or not - I'm the paranoid one who's worrying about possible PANDAS. My wife's the calmer one telling me not to overreact! I think she (and I) are so shell-shocked still that we can't contemplate the possibility of repeating this dark journey with another child.... Again, moms out there supporting multiple PANDAS kids: you are AMAZING!!!
  3. Hi, Wendy: I believe the standard labs for GAS detection are ASO titer and Anti-DNAse B. From what I understand, the vast majority of strep-infected people will show positive on at least one of these two. And "MP" is probably Mycoplasma pneumoniae, another nasty batcterial infection that triggers PANDAS-like symptoms. Part of the broader "PITAND" spectrum of this bloody disorder. While you're at it, the IGeneX lyme panel might be worthwhile. Best of luck. Hope you get the tests you need!
  4. Our son was unable to brush his teeth for > 1 year due to OCD contamination fears. We at least convinced him to chew xylitol-based gum after meals, and he actually liked it and chewed it most of the day. (Kind of became another obsession after a while.) We had read that it's great for preventing infection (including strep strains) in the mouth and gums. Anyway, now that he's doing so much better, he had his 1st dental appointment in > 2 years a few weeks ago. Amazingly, the dentist said his teeth looked great: minimal plaque and no cavities! Dentist was shocked. So we're firm believers in the power of xylitol, at least in chewing gum!
  5. Okay, our entire family (other than PANDAS son, who's still on Saving Sammy dose of XR) completed a month of clindamycin "eradication dose", waited a couple of months, and just re-tested our ASO levels. The local doc is concerned - and I certainly want to be cautious - but I need some guidance interpreting the results. Except for my wife, all of our titers have come down, but they're still positive. Here are the original and the new results. Person___|______Original ASO_____|____New ASO =========|=======================|=========== Dad------|---------443-----------|-----281 Mom------|---------241-----------|-----256 Son (10--|---------334-----------|-----247 Son (4)--|---------597-----------|-----328 So most of us are at least trending in the right direction. Our family doc believes the titers should have dropped further, though, and wants to refer us to an infectious disease specialist. Thought I remember reading a long time ago that ASO titers can take quite a while to return to the normal range after an infection (up to 6 months?), but I'm not sure, and think I've read that this isn't well studied. So has anybody else dealt with this (IowaDawn, Lynn J)? Should we still be concerned? Are more abx needed until we're sure we're safely in the normal range? I need a sanity check!
  6. Awesome, EA (a.k.a., Dr. E)! Maybe you can convince Dr. G to prescribe this for you at a dose tailored to your age / weight and find that "comfort zone" where you're wide awake during the day but can get a solid night's sleep, too. Hope this is the start of better days for you!
  7. Don't know if this helps, but here's a pinned "classic Buster" thread discussing theories of why IVIG works for autoimmune conditions. http://www.latitudes.org/forums/index.php?showtopic=7855 (You'll probably remember it, Peggy: you started it! )
  8. Buster could explain this the best, but I'll take a shot at conveying my understanding. The CaM kinase II activation levels that Dr. Cunningham tests for could explain some of this, I think. These enzymes are critical for neurotransmitter secretion and research indicates they may also be critical in memory formation. So the over-activation in PANDAS could explain why short-term memory is affected, and the stimulation of neurotransmitters can cause too much "noise to signal ratio": a PANDAS sufferer's neurons are firing so frantically that there's just too much background static to sort out the "important" thoughts from the random, irrational stuff. Threads of reasoning and short-term memories get "lost in the fog." The basal ganglia is such a critical control center for so many brain processes. When the PANDAS autoimmune attack inflames it and disrupts its normal signaling, it's not surprising that all heck breaks loose!
  9. Ditto! So - in the tradition of leading PANDAS docs on this forum - should we start calling you Dr. A?
  10. Heck, let's be honest... if us guys had to give birth, the human race would have gone extinct millennia ago.
  11. This was one of our son's (now 14) most crippling symptoms, too. He absolutely could not focus, could not do more than 10-15 minutes of homework at a time, and often had to re-read the same passages over and over. Frankly, he missed most of the last 3 years of school because nothing we tried worked. (We did homebound schooling, home schooling, he still couldn't manage to keep up with his classes. And this was a kid who excelled academically until the PANDAS bus ran over him.) He also couldn't even attempt to work if there was any distraction at all: any noise, too much light, strong smells (major sensory defensiveness). I think some PANDAS kids find the non-stimulant ADHD meds (strattera, intuniv) to be helpful for sharpening focus. Beth Maloney felt that strattera really helped Sammy in this regard. We tried strattera for about a month, but our son didn't feel like it helped at all so we discontinued it. One corollary of the brain fog seemed to be memory and recall issues. Our son told me he can't really remember anything from before he got sick (broke my heart). When he was 1st diagnosed with Sydenham's chorea, someone on the SC forum I used to frequent drew the following analogy: said SC (or PANDAS) takes your brain's "card catalog" and throws it up in the air; all the books are still in the library, but the map to their locations is all mixed up and it's hard to find the right shelf. Eventually, she said, the card catalog will get reorganized and all of those memories will be accessible again. Hope to heck she's right! So here's a positive note - our son just started back to school (1st year of high school... gulp) for the 1st time in 3+ years. Right now, he's finishing up some homework in the family room while our youngest watches a movie on the TV, our middle son's (loudly) getting breakfast, and our puppy is yipping. And he's able to concentrate enough to keep working; hasn't complained. Compared to the past 3 years, that feels miraculous!!! So with the right treatment (augmentin XR for our son) for the right length of time, healing does occur and the fog does lift!
  12. The company that makes this (NeuroScience) used to offer a "PANDAS panel" to test for immunological markers indicative of PANDAS. (They discontinued it a few years ago... maybe due to controversy?) They also offer a supplement called Kavinace that several parents on this forum reported being very helpful for reducing their children's OCD symptoms. (We tried it, but it didn't work for our son.) Looks like they now offer a Lyme test, too: https://www.neurorelief.com/index.php?option=com_content&task=view&id=604 Interesting!
  13. Excellent point, Elizabeth, but I wanted to add that - even if it's just strep - the "standard" dose of abx for standard duration doesn't cut it for many, many "classic" PANDAS kids. Our son is pretty clearly PANDAS (rising ASO with each exacerbation, positive response to steroid burst, entire family showing elevated ASO) but didn't sustain progress until 10+ months of high-dose augmentin XR. Dr. K's "normal" prophylactic dose (500 mg of augmentin once daily) was ineffective - our son had his worst exacerbation ever while on that dose.
  14. This is exactly what we did to pay for IVIG rounds 2 & 3. Our company uses Vanguard for our 401(k), and it was pretty easy: didn't have to provide a reason or justification, could apply online, and the rate was better than we could have gotten through any other channel of which we're aware. Good luck!
  15. We had a brand-new vocal tic "move in and stay" about 6 weeks after IVIG round 1, even though most other symptoms improved dramatically during that 6-week period. But our son wasn't on high-dose abx at the time (only 500 mg of augmentin once daily), and subsequent infections triggered a relapse. Not sure if this tic was triggered by IVIG itself or strep exposure after the procedure.
  16. Believe me, I share this fear with others. As you point out, nobody's really sure how much damage is done over a given duration, especially when PANDAS goes untreated. Here's an Australian web site I stumbled across a while back that scared the heck out of me after our son's 2nd exacerbation: http://www.adhd.com.au/PANDAS.htm . The most frightening passage is this one. I try to find positives from what I've heard from the PANDAS docs, though. Both Dr. K and Dr. L insisted that "these kids recover if they're treated." I keep reminding myself of those encouraging words from docs who've seen a lot of PANDAS children over the years. But - as has been discussed on other threads - I fear it's more a matter of managing an ongoing autoimmune condition rather than an out-and-out cure. And aggressive treatment is certainly critical!
  17. Dr, K is definitely a unique guy with an unconventional style and an off-the-wall sense of humor. But here's the good news. Our PANDAS son has been through the meat-grinder with an endless stream of docs over the past 3+ years. Quite frankly, he doesn't like doctors... and - based on the way he's been treated by many of them - I don't blame him. But he loved Dr. K! Dr. K could always make him smile or laugh, even in exacerbation when happy moments were extremely rare. He told me that Dr. K is definitely his favorite healthcare professional. Oh, and during our 2nd round of IVIG in Oakbrook, I was talking with the surgical nurse. She mentioned that they all love Dr. K, too, and that she takes her own children to him. Coming from a nurse who works with him regularly, I'd say trusting her kids' health to him is pretty high praise. So don't worry. The pre-IVIG consult is not long, not painful, and it's a huge relief as a parent when you finally speak with a doctor who totally "gets" PANDAS!
  18. From what I've heard and read, most experts believe that the autoimmune response itself doesn't cause permanent damage - no demyelination (sp?) or anything like that. But it does appear that - for chronic PANDAS sufferers, especially those afflicted at a very young age - the neural pathways associated with symptoms may become "locked in" somewhat over time. So even when the patient is free of strep, the BBB is closed, and/or the autoimmune attack is no longer occurring, there may be residual effects. Maybe Buster or one of the scientific gurus can clarify?
  19. Dr. K has been our son's "go-to" doc for PANDAS. He definitely prescribes abx but is more conservative in this arena (both in dose and duration) than some of the other "PANDAS rock stars," from what I've read here. (Although I think recent experiences with augmentin XR for "recalcitrant cases" may be softening his position on this.) He uses steroid bursts (5-day prednisone for our son) as a diagnostic tool only, not as a treatment option. IVIG is his preferred treatment at high dose (1.5 g/kg over 2 days, generally). Although he mentioned to me that he believes PEX may be more beneficial than IVIG for PANDAS kids with severe tics but little/no OCD, he does not order or administer it. In his experience, OCD is almost always a significant factor and - for most of his patients - the most debilitating symptom. Hope that helps!
  20. Our docs prescribed a month of clindamycin to try to clear our whole family, since all of us (besides our PANDAS son) had elevated / rising ASO titers. I remember reading some posts in the past where an infectious disease specialist had recommended a combination of clindamycin and rifampin for eradicating stubborn strep. Might be some other combinations that are prescribed by other docs? What type of antibiotic seems to work best in this instance?
  21. Yep, for 10+ months now. No plans to discontinue or lower dosage any time soon (at least until we get the ASO titers down for the rest of our family).
  22. That's awesome! Mr. Kipling sets the bar awfully high. I know I don't meet those criteria by a long shot... but striving and aiming high are a good thing, for young men and us old guys, eh? Thanks for taking the time to type all that in, Nancy!
  23. Our son's initial symptoms included migratory joint pain, muscle pain/weakness, difficulty walking. He was originally diagnosed with rheumatic fever, which attacks joints and connective tissue. Reactive arthritis is similar and can also be caused by strep (and other infections). Might be something along those lines for your ds?
  24. I hear you, Amy. Personally, I think the extreme ("exorcist syndrome") versions of PANDAS are indeed rare (thank goodness): this is what my son had, and it completely freaks the average M.D. out. As you say, they're not used to seeing this, and the severe psychiatric symptoms throw them way out of their comfort zones; they just want your child out of their office ASAP! I wonder about the milder cases, though, which I suspect are far more common. For example, I've read that more than a 3rd of school-age children will develop tics at some point during their childhood, but these are usually transient and resolve on their own. Nobody knows why. Is this a post-strep reaction? And are some milder cases of OCD, tics, etc., related to post-strep autoimmune reactions that just aren't as out of control as the "exorcist" kids? If it's milder, these children might get along okay with traditional treatments (SSRI's, anti-tic meds, CBT/ERP therapy, etc.) and never identified as PANDAS. It's a mystery.... The topic of this question is something that has bothered me over the years. I think, after reading the boards here that I am probably in the minority when I say that I do think that pandas is rare. Even among those with OCD & Tourette's. But then I have never known anyone with either OCD or Tourette's who didn't have an infectious trigger. I know that doesn't make sense. I look forward to the discussion on this topic as I think it will help me come to terms with how I feel about this personally. I think where my feelings stem from is that it is just so impossible in my mind that my dd's illness went undiagnosed for so long and nobody knew what it was or had EVER seen someone like that...how could they not, if it WASN'T rare? I'm guessing that the cumulative years of experience that all her doctors, nurses, specialists and teachers had was in the 1000's (of YEARS!!!) and nobody had seen this before? So hard to fathom. My dds case was very severe, though. And it did not respond to medications and therapies the way the the experts claimed normal OCD responds. Very interesting, I'm torn. Maybe this is the way my brain is letting me off the hook for not figuring it out sooner in my own dd? Maybe it is just my own personal lived experience with my dd. I don't know but I am always surprised when someone posts on here about it being more common than previously though.
  25. I've read comments from Dr. Swedo where she asserted that her NIMH team believes a quarter to a third of kids diagnosed with OCD or Tourette's actually fall into the "PANDAS subgroup." That would be hundreds of thousands of children, I believe.
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