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Everything posted by Worried_Dad

  1. They're the same book - one is the hardcover edition and the other is paperback. You can probably save some $ by getting the paperback edition.
  2. Beautifully said, Nancy! This is hard: just plain hard, for all of us parents (and for the afflicted children). It is not clear-cut in any way, and we're left to flounder through the medical murk, trying to find the right path to recovery for our kids. What I can say for sure: Dr. Cunningham and Dr. Leckman have been wonderful to our family for years now, generous with their time and input, asking nothing in return, humble about the limits of their current knowledge. They are widely respected researchers in this field and have certainly earned credibility in our family's eyes, personally and professionally. They don't have all the answers (and would freely admit that). But their opinions are well worth considering as we all try to figure this out for our specific situations. We're concerned about our ds's positive IGeneX test results. But - candidly, right now - our ds's situation feels more like PANDAS. The weight of the evidence (elevated ASO with every exacerbation, whole family's elevated ASO, positive results from steroid burst and IVIG, "exorcist syndrome" presentation, etc.) definitely leans that way. With a compromised immune system, is/was he vulnerable to other opportunistic infections? Absolutely. Could GAS be the "secondary" infection? Absolutely. I think folks on here have pointed out the key criterion we all end up using. If one treatment regimen isn't doing the job, if your sick child isn't improving, then it's essential to explore further. The tough part for us: our son is doing awesome right now on the "Saving Sammy" dose of XR. He's not 100% - after 3+ years of h*ll, not surprising - but he's awfully close. He's happy, fully functional, enjoying life and social life again. No bumps or backslides for > 1 year. The last thing in the world we want to do is take any chances on derailing that (and I'm sure every parent can relate). So - for example - discontinuing the XR in order to pursue Lyme DNA testing just isn't an option for us. We plan to share our experience going forward, no matter how it goes, because folks who came before us bravely did that and consequently gave us invaluable guidance when we most needed it. There's plenty of room here for multiple points of view, and I think this forum clearly shows that there is no "one size fits all" answer. May we all ultimately find the right path through the swamp!
  3. Wow - very intriguing and timely info, thanks for sharing! I'm still waiting to hear back from Dr. C about our ds's positive IgM results. Did hear from Dr. Leckman (who is based in CT so familiar with Lyme as well as PANDAS). He 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 was: if your ds is doing well on current abx, maintain a steady course. Got a lot to think about before our doc appt next week.
  4. I think this is one of those topics like religion or politics: it inflames great passion on every side, and people with honorable intentions cannot hide that passion in their posts. I sincerely value the input I've received both from the PANDAS side of the debate and the Lyme side, so please accept my gratitude to those who have shared their perspectives. I admit to being confused and perplexed... but together, maybe we can find the answers. This forum has already given my family more answers than any other info source!!! I've sent e-mails to some of the docs / researchers who have been most helpful to my family over the past few years, asking for their perspectives as well. I'll share those when I know more. Are we havin' fun yet? "PITAND" is sounding more and more like the safest label for what ails our kids - can't wait to see what they call it in the new white paper! I do not want to go back to the time that this forum turned nasty. I ask this in all sincerity, without meaning to start an argument - could you please avoid statements that seem to criticize others who may have done tests or followed protocols you don't personally agree with? I support your right to express your opinion, but not at the expense of others. Maybe it's not how you meant it, but it just reads "meanly". As an fyi - my son's doctor has kept him on Augmentin XR while we follow a more traditional protocol for Bartonella. He did not want to rock the Pandas boat or mess with anything that was working.
  5. Something else occurred to me on which I'd be interested in getting feedback. When our ds was 6 and we lived near Cincinnati, he came down with a "mystery illness" that baffled the local docs there. His white cell count plummeted to levels where our ped mentioned leukemia, and his legs became so weak he literally couldn't walk; we had to carry him around. No neuropsych symptoms: he remained the same sweet-tempered kid, just looked dreadfully ill. We were terrified. After 10 days, his white cell count started coming back up. The docs never explained it or reached a diagnosis, just called it an "unidentified viral or bacterial infection" that his immune system eventually cleared. Is this familiar to Lyme folks? We did at that time live very near Miami Whitewater Forest and took lots of long hikes in the woods. Yikes.
  6. Ah... is that kind of like the chronic PANDAS kids who have low ASO / Anti-DNAse B because they've had it for so long that the titers no longer register? Yeah, I can see that. Sigh. Looks like it's gonna be an interesting New Year. Gotta keep reminding myself that - for whatever reason - our son's doing great right now on the XR, so that's a blessing!
  7. Yeah, the ehrlichia result is scary. I'm still struggling to understand how to interpret it. The IgG for E. chaffeensis was negative, and both IgM and IgG for A. phagocytophilum were negative. And in the lab report, the positive IgM for E. chaffeensis is at the very low end of positive. And the lab report contains a disclaimer that different rickettsial species can cross-react and cause false positive... but then, maybe any rickettsial species is bad news, eh? In all honesty, there's a part of me that wishes for an explanation of these results that means no Lyme. I'm trying to guard against that "disease fatigue"... but I can't deny it's there.
  8. Hah - somebody else PM'd me this same advice, which I thought was excellent. Great minds think alike, eh? I have in fact sent an e-mail question to Dr. C. She's been wonderful to our family over the years since we first sent our ds's blood sample to her for testing. With the Holidays coming up, I don't know when she'll get a chance to respond, but I'll share her feedback via follow-up post when she does. Thanks, P.Mom!
  9. Good point, JAG. Ultimately, if we find an LLMD who's just open-minded and willing to treat proactively (like our former LLMD who passed away), then that's a big win. We, like you, have tried everything along the way, including a bunch of psych meds that made things worse. But if the psych meds had made our ds feel better, we would've stuck with 'em! And I don't wanna poke that bear - I wanna drive a stake through its bloody heart!!! (No offense to animal lovers. Don't report me to PETA!)
  10. FYI, somebody asked about which tests we did. We did the IGeneX 4090 (Basic Lyme) and 5090 (Complete Co-Infection) panels. Didn't do the PCR testing because that would require us to stop abx... and we can't do that right now. Still waiting to find out of our insurance will reimburse anything: reimbursement would be a great Christmas present!
  11. Thanks, Rachel, and thank you to everyone for the thoughtful posts and PM's. Yeah, I'm feeling a bit like a "wornoutdad" right now.... As folks here have advised, we definitely plan to try contacting an LLMD. Being a bit OCD about all this myself, I contacted ILADS a while back and they sent me contact info on one LLMD in our area (SW MI), but they didn't know if she accepts pediatric patients. Guess we'll find out next week. And I very much appreciate the feedback from the more "Lyme literate" folks on here. (I researched Lyme 4 years ago, when we thought that's what ds had, but it's pretty hazy now.) But I still do have a lingering question about this. Our original LLMD started Lyme treatment (doxy) 4 years ago as a precaution but when the Lyme tests were negative and the ASO was highly elevated, he diagnosed ARF/SC, later PANDAS, instead. The IGeneX results do appear borderline according to their lab report. And - right in the lab report on the IgM Western Blot that was positive - they state "infection with HSV, EBV, HCV, and/or syphillis may give false positive results." If IGeneX, who I think clearly is considered to have expertise in this area (based on the consistent recommendation to use them for Lyme testing), acknowledges that other viral / bacterial infections can skew the result, then isn't it at least plausible that GAS infection might do the same? Not saying we don't need to pursue Lyme further with another LLMD. We do, and we will. But here's my secret fear: if we're asked to stop the XR and rotate to new abx, and it really is PANDAS (remember the entire rest of our family still have elevated ASO, so our house is Strep Central), what if that does more harm than good? And other folks on the forum have posted about stopping abx when things were going well, seeing relapse, and then resuming the formerly effective abx without seeing the same benefit. That would be tragic to say the least! I realize a sharp LLMD may share the same fears and may say "stay on the XR until we resolve your family's ASO mystery, but let's add Abx A to the mix." And of course, we as parents always have a say in any medical decision. (Boy, have we learned that lesson in the past 4 years!!!) It just seems like the science around PANDAS makes sense, the animal model studies at Columbia and Tel Aviv seem to confirm the hypothesis, and it seems astronomically unlucky for our poor son to have both PANDAS and Lyme. Anyway, thank you all for sharing your insights. They're invaluable. My wife and I have a lot to think about this coming week!!!
  12. SWEEEEEET!!!!! Maybe your ds and Dr. Emerson can team up. Dr. E can focus on the psychological side, and your ds can find the meds and immuno treatments. PANDAS doesn't stand a chance!!!
  13. I apologize if this gets long. And I want make clear up-front that I totally believe both Lyme and PANDAS are distinct, dreadful disorders that often go tragically undiagnosed due to "medical controversy" swirling around them. So our ds has always seemed like a classic case of PANDAS to us. Rapid symptom onset after high fever Overnight explosions of PANDAS symptoms (extreme OCD, tics, anxiety, dilated pupils, urinary urgency, anorexia, emotional lability, rages, crying jags, suicidal talk, etc.; "exorcist syndrome") Rising ASO titer with each exacerbation; falling ASO with remission after successful treatment Positive response to steroid burst and IVIG Dramatic improvement on "Saving Sammy" dose of augmentin XR The helpful docs we saw (and the 1st to diagnose our ds was an LLMD who originally suspected Lyme and put him on doxycycline, which didn't help) told us that PANDAS generally comes on like a firestorm while neuropsychiatric Lyme generally develops more gradually (and that seems consistent with the pattern I saw in "Cure Unknown"). So PANDAS seemed the better fit. Add to this the fact that our entire family has shown elevated ASO titers and it explains why our son's case was so recalcitrant. And augmentin XR has been his miracle drug; from what I could tell during web research, this isn't a common abx for Lyme. That being said, all of the recent Lyme posts on here made us paranoid, so we ponied up the bucks to pay for the IGeneX Lyme and co-infection panels. Just got back the results, and they complicate things. Need help from the resident Lyme gurus to interpret this! All were negative except the following: Lyme Immunofluorescence Assay (IFA) - INDETERMINATE (1:40) Lyme IgM Western Blot - POSITIVE (18 kDa +, 31 kDa ++, 83-93 kDa +) Erlichia chaffeensis IgM - POSITIVE (1:40) We no longer have a local LLMD - our former LLMD passed away in late 2008. Our family doc is baffled by all this but wants to discuss these IGeneX results and determine next steps. Our son's doing great right now on the continued "Saving Sammy" dose of XR, but our local doc won't continue to refill this forever. I'm confused! So I wanted to ask this question. There've been a number of posts about Dr. Cunningham acknowledging that Lyme sufferers can test positive on her CaM kinase II "PANDAS" test. Lyme and PANDAS obviously share a strong infectious component, and maybe an autoimmune component too. So, by the same token, is it possible that kids who are truly PANDAS may test "slightly positive or indeterminate" on the standard Lyme tests? Our ds's Lyme results are borderline, but his (and our entire family's) strep titers are strongly positive. Sigh.... Honestly, I was praying that the Lyme / co-infection tests would come back negative so I could sleep better at night. (We also tested the entire family for Myco p - all negative, thankfully.) I'm interested in people's perspectives on this. We meet with the family doc on 12/30 to plan next steps.
  14. Our ds was also a straight-A student before PANDAS hit. Then for 3 years he was homebound / home-schooled and barely got through any work at all. He couldn't focus, couldn't read and retain stuff, couldn't think straight, couldn't do more than 10-15 minutes of work at a time, max. It was devastating to his self-image (because school had always come easy to him) and heartbreaking to watch. Now - after 2 more rounds of IVIG and 14 months of the "Saving Sammy" dose of augmentin XR - he's doing much, much better. He's back in school and getting A's and B's even after the long absence and essentially "missing" some grades. But it's still a bit of a struggle. We had to get accommodations from the school on quantity of homework, extensions for due dates, etc. He does quality work, but it takes him a long time compared to the pre-PANDAS days. He's fighting to keep up with the workloads and the homework does exhaust him by end of day. So things continue to improve, and school is getting easier... but we believe his brain is still healing, so reasonable accommodations are key.
  15. Although scary, a Herxheimer reaction is actually a positive sign that the antibiotic is doing its job and killing off pathogens: the old "it'll get worse before it gets better" effect. SF Mom has posted some great info on this, like this thread: http://www.latitudes.org/forums/index.php?showtopic=7800 So - even though a herx can be awfully tough on the PANDAS child and the caregivers - it's actually proof that the abx are working. Others on here can probably share better personal observations of what it's like to deal with this and how best to cope / minimize the impact.
  16. They're telling you the "normal" ASO titer range goes all the way up to 640?!? That seems way off to me. I know there are differences of opinion among labs / docs, but most consider anything above 160 to be positive, or at least above 200. I've seen a few online references that move the upper range to 330 for school-age children... but your son's results in the 500-600's seem unequivocally elevated by almost every published standard. I know the trend is more important than the absolute value, but these sure seem high. And when docs dismiss elevated titers with "oh, your son/daughter just naturally runs high," that's a major cop-out from what we've experienced. I'd double-check with Dr. B about those ASO levels, for sure.
  17. Alyssa: Thank you so much for your candor, for the invaluable insights you've given us parents, and for the hope you give us that our kids, too, can recover and reclaim their lives. You have contributed so much to the discussion here... but I totally get why you need to escape the daily PANDAS stories. I've been cutting back on my "forum obsession" too, lately. Your posts have really, really helped many of us, parents and patients. Hope you have a wonderful experience in Europe and can start completely fresh there, with no "PANDAS baggage" to weigh you down. You will be sorely missed!!!
  18. Wow - AWESOME! Congrats on the college graduation, alyssa. You are such an inspiration to all of us parents that our children can go on to have happy, healthy lives!!!
  19. Yeah, our ds had serious difficulty walking, especially in the early days when his diagnosis was ARF / SC. And Sammy Maloney walked hunched over all the time because he was "avoiding the invisible obstacles" generated (according to his OCD) by electrical outlets, etc.
  20. This is desyrel, right? Our DAN doc prescribed it "off label" for our ds's severe insomnia. It did seem to help for a while, but we had to keep upping the dose and side effects became an issue, so we stopped. When we tried it again during the next exacerbation, our ds said it made him feel extremely suicidal and we quit for good. Might be worth trying at a very low dose... but, like your ds, ours always seemed to react to traditional psych meds in a way opposite to what was intended.
  21. This was one of our ds's (now 14) most terrifying PANDAS symptoms. I think he was so overwhelmed and miserable from the storm inside his brain that he just wanted the pain to stop. During exacerbations, he constantly asked us to kill him. He hurt himself by punching self / walls / objects, banging head, etc. On one occasion, he grabbed a kitchen knife while my wife and I were momentarily distracted and dragged it across his wrist. Barely left a mark, luckily... but I don't think it was for lack of trying. I would take this very seriously. These PANDAS / PITAND children are in absolute torment and lose hope that they will ever be "well" again. I think the older kids (teens especially) are extremely vulnerable to suicidality. And for our ds, psych meds (zyprexa, desyrel, ativan, klonopin, risperdal, etc.) were activating and made his emotional lability far, far worse. In our case, I arranged for intermittent FMLA leave from work and we put our youngest (now 4, then 2-3) in full-time daycare so that either I or my wife could supervise our PANDAS son at all times. After the kitchen-knife incident, we also made it clear to him that - if he ever did anything like that again - we would have to take him to the hospital for his own safety. Like you, we were pretty sure that a psych hospital stay would have been disastrous, but we didn't know what else to do. To our immense relief, he never acted on suicidal thoughts again, although he often confessed that he thought about it all the time. And - after serious PANDAS treatment (IVIG, augmentin XR) - the suicidal talk / thoughts vanished! So hang in there. Treatment will help. But the suicidal threats of a PANDAS teen are not a bluff.
  22. Unfortunately, IVIG was not easily accessible for our ds over the past few years. After trying for months to find any local doc willing to order it, we ended up traveling to Chicago for all 3 rounds of IVIG with Dr. K (and of course paying in full up-front). Maybe the impending "white paper" will clearly specify an IVIG treatment protocol that will make it easier to get this locally? (I sure pray for that to be the case.)
  23. Our ds had this, too, when he first became ill, before we had a diagnosis and got him on abx. In his case, we think he had an unresolved strep infection causing the intermittent low-grade fevers. For him, those fever spikes have vanished on long-term augmentin XR.
  24. He asked us to send him status updates via e-mail at 1 month, 3 months, 6 months, and 1 year post-IVIG. We actually sent updates more frequently because things were not going well at all for 4 months following IVIG rounds 2 and 3. Of course, he always told us to contact him immediately if something serious developed and always responded quickly when we were in crisis. Also wanted to clarify something: although Dr. K was not a fan of higher-dose, longer-term abx, he did agree to prescribe the "Saving Sammy" dose for our son when the expected progress did not occur after IVIG. And - when we started seeing dramatic improvement - he kept refilling the scripts for us. Dr. K told us several times, "I learn something new from every patient." So I have great faith in Dr. K as an individual practitioner to keep trying different treatments if the standard ones aren't working. What I worry about is a white paper coming out "by committee" that over-simplifies the treatment options, and which is then used by local docs to completely dismiss long-term abx. That's exactly what we (and many others) experienced due to the old, inaccurate, and over-simplified info that for years graced the PANDAS page of the NIMH web site. That one web page was used like a club to beat us down again and again for almost 3 years. Can't begin to guess how much harm it did for many, many desperately ill PANDAS kids. Sorry to keep harping on this. But past experience makes me paranoid!
  25. Really don't mean to belabor the point... but in our case, HD IVIG was not anti-inflammatory in a lasting way. Our son's worst exacerbation occurred after IVIG round 1. All 3 rounds were administered by Dr. K in Chicago. So while this might be the theory - HD IVIG "resetting the immune system" to eliminate production of the offending autoantibodies - it doesn't work every time for every PANDAS child. It unquestionably does work sometime: there are parents on this forum who have joyfully reported full remission after just 1 IVIG. That's awesome. But, for us (and others on this forum), 1 round (or 2, or 3) didn't do the trick fully or permanently. Again, there are so many factors at play here. In our case, we strongly suspect at least one other member of our family is a strep carrier and kept re-exposing our son. But that's a pretty good reason to be flexible in regard to longer-term abx, I think.
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