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Everything posted by Worried_Dad

  1. Our PANDAS son's symptoms began (at age 10) with severe joint pain that moved from joint to joint. This is a classic symptom (called migratory polyarthritis) of acute rheumatic fever, another in the spectrum of post-strep autoimmune disorders related to PANDAS. There may also be nodules around the inflamed joints that are similarly linked to ARF. (Our son was originally diagnosed with ARF / Sydenham's Chorea, later changed to PANDAS.) Post-GAS autoimmune mechanisms are also implicated in reactive arthritis. And swollen, painful joints can also be a symptom of Lyme, I believe. As Phasmid said, I'd definitely take this seriously. Could be related to PANDAS or could be a sign of another infection at work.
  2. If your doctor will order it, I would think that all 3 (ASO ADB, Myco p.) would be a good idea as a precaution. We're still struggling will elevated ASO titers for the rest of our family, despite no overt strep symptoms and no positive throat cultures. Good luck!
  3. Hang in there, Swim. Whether it's GAS, Myco p., Lyme, or some other infection / co-infection combo, it does seem that many kids experience the "it gets worse before it gets better" symptom pattern. So maybe, in a way, it's a good sign: the storm before the calm? Praying for you and your ds.
  4. Amen, sister. The sad truth is that most of our kids are the guinea pigs and the pioneers on the PANDAS/PITAND frontier. I'm praying that our children's experiences will smooth the path for future kids... but I've resigned myself to the harsh reality that we're kind of on our own for now. This is definitely progress, and I'm excited to see it happening. But - as Buster posted recently - if we're lucky, then maybe 5+ years from now, mainstream medicine will finally have a clue about how to approach this illness.
  5. Thanks, Wendy and Rachel. Good ideas. Right now, I still have a call back into our family doc to discuss the urgency of abx treatment, but they haven't called back (sigh). We're planning to explain the situation to the LLMD tomorrow and ask for his recommendation for how to proceed, but don't want to step on that appointment because it's only our 2nd for PANDAS ds (and the one where the LLMD will be reviewing results of all the blood work he ordered at the 1st appt). Still hoping that a simple phone call from the LLMD to the PA at our local family practice might do the trick, provide enough "CYA" to get the abx script. Guess we'll see.... P.S.: Rachel, loved the line about "in Michigan it's easier to get crack than antibiotics." If only it were a joke!!!
  6. Hah - we've been taking OLE as a "natural abx" too. Unfortunately, it hasn't worked out for us so far: whole family has been hammered with bugs (viral, we think) for the past month+. This time of year, there just doesn't seem to be any escape. 'Course, it's possible that our immune systems are just really, really wimpy....
  7. Have to agree. When our ds 1st got sick (and was originally diagnosed with SC), he had episodes when he could not use his arms or legs, could not walk, could not even raise his head. He would sometimes collapse to the ground with no warning, unable to control his muscles or move. It was bizarre, episodic, and terrifying. Spent a lot of time on an SC board back then, and many people there described the same phenomenon. The veterans on there called it "the rag-doll effect." And it struck our son at times when there was no visible stress (emotional stress anyway). Since the basal ganglia help regulate motor control, it seems logical that these episodes are related to the same inflammation that causes other SC or PANDAS symptoms... to a layperson, at least.
  8. Sigh. I'm just SO tired of everything with our local docs being a battle. Hadn't checked ASO on the rest of our family in 3 months, when they were falling but still well above "normal" range. So I asked our family doc for orders to run titers again on the 4 of us (not including our PANDAS son). They called Friday with the results. For 3 of us, good news: ASO continues to fall (although my wife and I are still above 200). For our youngest ds, not good news: after falling from 597 to 254 after a month of clindamycin, his ASO has now risen back up to 499. No overt strep symptoms... but then, none of us ever had any "classic" strep symptoms or positive throat cultures. So we begged for another round of abx for our youngest, noting that the clindamycin certainly worked well before and dropped his ASO dramatically. The nurse called and left a phone message explaining that the PA had "consulted with an infectious disease specialist" who told him that "abx would not be helpful in this situation." Huh?!? Clindamycin clearly helped before, leading to a dramatic drop in titers for our youngest. His ASO has risen 250 points in 2-3 months, which pretty clearly indicates a GAS infection. And he's living in the same house with a kid who has "RF of the brain." What the H-E-L-L ?!? (Incidentally, this is the same ID doc who declined to take our PANDAS ds on as a patient because he "didn't see what else could be done.") Our PANDAS ds has hit a minor rough patch in the past few weeks. Now we know why. And the local doc - who knows the full history and has seen the effect of abx for our PANDAS ds - won't do anything now because the specialist says it won't help. ARRRRGH! We see the LLMD in a couple of days for our PANDAS ds, but he's never seen our youngest, so he can't prescribe anything for him. Hoping he might agree to call our family practice PA and advise the use of abx for the youngest. Think the PA is just worried about having an expert recommendation for "CYA" purposes. Is it just me, or do many docs seem to have abandoned common sense these days? (Rhetorical question dripping with sarcasm....)
  9. Ah, emmalily... that just sucks! Do not listen to garbage like that, because you know better. Everybody on this forum will back you up!!! We had some (normally sympathetic) family members make similar comments about our PANDAS son. Things like he "just does it for attention," "lacks discipline," "military school will cure what ails him." Didn't hear this face to face but "through the grapevine" from others in the family. It shocked us. That's one of the cruelest things about PANDAS: the traumatic injury is deep inside the skull, where people can't see the damage, so they just don't get it. The PANDAS sufferer gets judgmental attitudes and condemnation instead of compassion. Ignorance deserves to be ignored... so ignore the boneheads who lay this kind of junk on you. It's wrong, it's callous, and it's unfair. Hang in there - you're going to get to college and do awesome!
  10. Sigh. Need Buster to weigh in on this, but is this just a re-publication of Singer & Kurlan's earlier study with some new notes added in by Leckman? Seems like it has the same flaws Buster has enumerated before in terms of misapplying the PANDAS criteria (different definition of "abrupt onset" and "dramatic exacerbation" than classic PANDAS cases; much less significant Y-BOCS swings, fewer symptoms, etc.) and completely skewing the results by allowing the PCP to treat with antibiotics. So - if I'm reading this right - 60% of the PANDAS kids were treated with abx and only 28% of the non-PANDAS kids were. Then is it any surprise the PANDAS group had less exacerbations?!? Maybe I'm missing something, but this seems like a rehash of earlier work with maybe a few more caveats added in about the study's limitations. Buster, please clear away the fog!
  11. It's actually a supplement called Neurolink: http://www.pureformulas.com/neurolink-180-capsules-by-designs-for-health.html . At least, that's what's written on our receipt. It's backordered, but I'm assuming this is the product the LLMD is ordering for us.
  12. You know, he never mentioned that. I imagine it's like LLM said: he's probably evaluating our ds's clinical picture and basing his current approach off the fact that our son's doing pretty well. I'm not sure what all he included in the bloodwork, so maybe he's waiting on that to make decisions as well?
  13. Wish I could explain it better and not misrepresent things. Here's my recollection / interpretation of what he said. Since the IFA was indeterminate, IgM WB was positive but only 3 bands, IgM Ehrlichia was borderline, and everything else was negative, he didn't consider this a compelling case for active Lyme. After such a long time on the high-dose XR, he would have expected a stronger response and more positives (like IgG). Said if ds had not been on the XR for so long at treatment dose, he would have recommended provocation testing with a high-dose abx to increase the odds of detecting "hidden" Lyme. And if there is lingering Lyme, he felt that the XR was sufficient to "kill 2 birds with 1 stone" in terms of the Lyme and the GAS. Hope I didn't butcher this too badly. Lyme gurus, if this is poorly stated, it's not the doc's fault: it's mine!
  14. Had our 1st appointment with the new LLMD yesterday. Went great! Found out while chatting with the receptionist that she and most of this doc's office staff used to work for our original LLMD (who passed away in 2008). Just seemed like good karma! And I noticed a framed certificate on the wall in appreciation for this doc presenting as a scientific session speaker at the October 2009 ILADS conference. Very reassuring. He seemed like a nice, soft-spoken, down-to-earth guy. Our ds actually liked him - one of only 2 docs he's clicked with since this whole PANDAS adventure began!!! (The other is Dr. K. For those who haven't met Dr. K, he has a unique, wacky sense of humor that most kids seem to love. For those who have met Dr. K: you know what I mean. ;-) So this particular LLMD's take on our ds was this. First, he thought the IGeneX results were borderline: certainly said it's possible that our ds had Lyme and/or ehrlichiosis in addition to PANDAS but didn't question the PANDAS diagnosis given the evidence. Said he didn't even see the point in further "provocation testing" for Lyme since our ds has been on treatment-dose abx for so long. Said that - even though it's not widely prescribed for Lyme - augmentin is a potent abx that is effective for BB and other pathogens. He did not see a need to switch or introduce additional abx at this time. Have to admit, this was a huge relief. As far as testing accuracy goes: he said he hasn't heard of GAS cross-reacting with Lyme, but that doesn't mean it can't happen. He explained that these bacteria are constantly evolving, mutating, and even mixing with each other and swapping DNA. Said that the GAS of 20-30 years ago is not the same as the GAS infecting people today. Said that definitive testing for specific bacterial agents is problematic because, over time, they learn to mimic each other and present some of the same antigens. (Mentioned that Lyme band 41 is notoriously non-specific in this way.) So - for now - he wants to stay the course with the augmentin XR. Did draw a bunch of blood to test for liver & kidney function, vitamin D levels, etc. Also added some new supplements for general immune health and fighting infection (garlic, cat's claw) as well as one (ordered) for neurotransmitter function (to help with the focus issues that make homework challenging). Want to thank the "Lyme-ies" on here for making me paranoid enough to pursue this path. My ds and I both got a really good vibe from this LLMD, and he's going to be a valuable medical resource going forward. So nice to have a local doc who truly "gets it"!
  15. Us too - our son's 1st major symptom explosion occurred on his 11th birthday, which he ended up celebrating in the ER. Not a birthday any of us will want to remember... but can't forget.
  16. I'd be concerned about the once-a-day dosage, too. Our ds was also on 500 mg of augmentin once daily (per Dr. K) and kept relapsing. When we lobbied Dr. K to try the "Saving Sammy" dose (1000 mg of XR twice daily), the relapses stopped and he made steady progress. For our son (now 14, about 120 lbs), 500 mg once a day didn't cut it. Because regular Augmentin has such a short half-life (only about 1.3 hours), I think you are probably justifiably concerned. As I understand it, Dr. K. prefers regular Augmentin to its time-released version, Augmentin XR, because the regular formulation has a higher clavulanic acid component, and he feels the clav acid is a key component. But the half-life of clav acid itself is only 1.0 hour, so, either way, if your child is returning to school and/or any kind of regular social life, the risk of re-exposure with once-per-day coverage is a little daunting. I know some parents have successfully lobbied with Dr. K. for a prescription for the XR version or higher doses of the regular Augmentin. Not knowing how old your child is or what he weighs; I suppose if he's young/small enough, 250 mg. twice daily might be sufficient. Generally speaking, though, Augmentin doses tend to run considerably higher than azith doses for similarly-aged individuals, and if Dr. K. felt that 500 mg. once daily was appropriate for your DS, then he could probably handle 500 mg. twice a day. Maybe some others will chime in here with a different experience on this front . . . something more comforting for you. For comparison's sake, my DS began PANDAS treatment at age 12 and about 130 lbs.; he initially took 1,000 mg. Augmentin XR twice daily. The recommended adult dose of Augmentin XR for active infections (sinus, etc.), meanwhile, is actually 2,000 mg., twice a day.
  17. FYI, there was a similar thread on here just over a year ago: http://www.latitudes.org/forums/index.php?showtopic=5963 I never had the guts to respond to that one. I pretty much try to block my teens out of memory because it was such a painful time. But I'll 'fess up: yeah, since we found out what our oldest son is dealing with, it sure clarified some things from my own youth. I was sick all time, caught every bug that came along, had tubes in my ears due to chronic infections, had T&A due to chronic infections. At age 10 or 11, I remember that suddenly everything just fell apart. I recall sitting in class, barely able to see straight because of constant headaches. Out of nowhere, felt a relentless state of heightened anxiety (bordering on agoraphobia) for no good reason. Very OCD-ish about schoolwork and grades. Withdrawn from former friends and social life. Seriously considered suicide. I hate even thinking about those days now. The "cloud" shrouded me from 10 until mid-twenties, I guess, although things did start to improve after that. I've never spoken to anybody about this, not even my parents. Back then, people just didn't talk about psychiatric problems. The stigma was huge. I remember doing everything I could to hide the inner turmoil from family, friends, teachers, etc. And - about 20 years ago - I was diagnosed at Mayo with Crohn's disease, an autoimmune disorder. I don't believe that's coincidental. On the positive side, for our brave teen posters (EA, emmalily) - things did get better over time even without any kind of treatment. And every year since has been better than the last. With proper treatment, PANDAS doesn't stand a chance against you! (Deep breath....) If you're reading this, then I guess I finally found the guts to press the "Add" button.
  18. Hah - no offense taken. I think paranoid is an extremely accurate description!
  19. Hi, PhillyPA: I'd say he's 95+% at this point. Can't say that he's totally back to where he was before this 4-year journey began - still struggles with homework load and is still very sensitive to light - but he's back to living a "normal life." Back in school after a 3-year absence, taking taekwondo and loving it, spending lots of time at the local teen center. For a kid who was literally unable to leave our home (a few rooms in our home) for several years, it seems like a miracle. But he's definitely still healing. To be honest, we did some additional testing primarily as a precaution, because our son was a "recalcitrant case" (per Dr. K) and because we have this ongoing mystery of high ASO for our whole family. I'd read posts on here about other families plagued with high titers across the board that ended up finding a co-infection of some kind (Myco p., Lyme, others). Since our local docs are pretty much baffled by our family, we figured it was prudent to ask for more testing. So, yeah... I think you called it right. I was feeling paranoid based on recent developments for other families on this forum. If the rest of our family didn't have stubbornly high ASO, we probably wouldn't have done the Myco p. and Lyme testing.
  20. Wanted to share some feedback we received from leading researchers who have been very helpful to us over the past few years. Dr. Leckman (who is based in CT so familiar with Lyme as well as PANDAS) recently met with both Dr. Charles Ray Jones and Brian Fallon to discuss their approaches to treating Lyme. Said he was quite impressed with Dr. CRJ, who uses antibiotics and IVIG in his practice (similarly to the PANDAS docs). Said they haven't seen a lot of Lyme among PANDAS patients but there have been a few. Given the symptom similarities and complexities, doesn't doubt that Lyme is sometimes misdiagnosed as PANDAS and vice versa. His advice for us was: if your ds is doing well on current abx, maintain a steady course. Dr. Cunningham responded with some details similar to what P.Mom already posted ( http://www.latitudes.org/forums/index.php?showtopic=11478 ). She did add one bit of info that I found fascinating: "We do know that immune responses against group A streptococcal antigens may crossreact with the Lyme agent, Borrelia burgdorferi." So personally, this reinforces to me that the testing isn't definitive enough at this point to clearly, unambiguously distinguish between PANDAS and Lyme / co-infections in some cases. As others have posted, the "Cunningham tests" for PANDAS/SC can also show positive (at least for CaM K II) for kids suffering from Lyme. And - as the IGeneX lab report repeatedly stipulates - other viral / bacterial agents (including GAS, per Dr. C) can trigger false positives on Lyme tests. At the end of the day, both PANDAS and Lyme remain primarily clinical diagnoses... and they have so much symptom overlap that it's awfully tough to distinguish between them. We have an appointment with a new local LLMD next week. We intend to review the labs and have a frank discussion about our son's / family's repeated elevated ASO titers and remarkable progress on augmentin XR. He'd need to present very compelling arguments for us to risk "messing with a good thing" for our son at this point. Really just hoping he's a good guy who is open-minded and honest about the unknowns. If that's the case, he'll be an invaluable medical asset for our ds in the future, no matter how things play out. I'll post the key aspects of that discussion when I can. Hope 2011 is starting well for everybody!
  21. Liked the Venn diagram, love this tabular format. Presents a lot of info in a very concise, easy-to-digest way. Maybe we should collect your posts on here and submit 'em to a leading medical journal?!? (If only... would be so valuable for the docs to see.) Or maybe Diana P can find a place for 'em on PANDAS Network? Nicely done, sir!
  22. You give Buster feedback on here? I woulda assumed that you got 1st crack at reviewing all his stuff as "wed-itor in chief"! (I don't even post until I get my better half's approval... in writing.)
  23. Is your ds in exacerbation at the moment? During exacerbations, CBT/ERP was utterly useless for our ds (also 14 now). It made him more anxious and magnified his OCD. Our therapist finally gave up, saying that it was not possible to make progress in an office setting, and just gave us some guidelines on how to attempt ERP at home. That started to work better once our son's PANDAS symptoms in general began remitting on the "Saving Sammy" dose of augmentin XR. Hope you see progress soon. For us, though, we backed off the CBT/ERP until our ds was capable of coping with it enough to make some progress rather than just becoming more discouraged. Meg's Mom is a CBT/ERP "guru." Maybe she can offer some constructive advice?
  24. I'm no expert, but my understanding is that PANDAS is just one subtype of a broader category of post-infectious autoimmune disorders called PITAND (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders). I believe that researchers originally coined the term PITAND for the broader spectrum of these types of illnesses, acknowledging that many viral and bacterial triggers caused a similar set of symptoms. PANDAS identified the subgroup of patients who seemed to clearly and consistently react to GABHS infections... although even these patients exacerbated when exposed to non-strep infections after the initial strep autoimmune reaction was initiated. So PITAND is the superset, I think, and PANDAS is the subset. Many parents on here have kids who are PITAND but not PANDAS, which is why the nice folks at ACN who host this forum changed the name to "PANDAS and PITAND" a while back. And of course, Lyme / co-infections factor into this as well, even though there's still uncertainty about whether they involve an autoimmune response. Sigh. It's all pretty darned confusing, isn't it?
  25. We tried SAM-e in the early days for mood support as well, but gave up because it didn't seem to help with that. We've been using milk thistle as a supplement to promote liver health due to the long-term abx our ds is on.
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