Worried_Dad

Oops... sorry for the acronyms. GAS is Group A Streptococcus (the strain that causes PANDAS, Sydenham's Chorea, Rheumatic Fever, etc.). XR is shorthand for augmentin eXtended Release - the specific type of abx that Sammy Maloney took in the book "Saving Sammy" (and which our ds has been on for about 18 months). What is XR? Dumb question,I know. I need to go back and review the book. What is GAS?

Agreed! I've seen this assertion about carriers not reacting to GAS with rise in titers, and it always confuses me. How do they identify a carrier if there is no sign of GAS infection? Do these carriers show positive throat cultures, just no titers? This hasn't been our family's experience, anyway. We've all shown elevated titers without "classic" GAS symptoms. Our youngest in particular keeps spiking high ASO with no symptoms; local docs have been hesitant to treat him with abx and have implied to us that he's probably a carrier and that the infection is "benign." So many different opinions on this from the medical community: I get the feeling they really don't know what a "strep carrier state" is yet or what implications it may have for the carrier long-term. I do know this: when our youngest spikes high ASO, our PANDAS ds reacts. And abx (month of clindamycin) brings our youngest's ASO back down, so it certainly appears that he's harboring active infection despite no obvious symptoms. FYI, found this article (below) from 1989. If I read the abstract right, it seems to say that carriers do often show high ASO titers, just no classic symptoms? I'm confused!!! http://www.ncbi.nlm.nih.gov/pubmed/2600456

Hi, Shirley: Assuming from your post that Ethan was off abx until this recent relapse? Which abx is he on now, and at what dose? I can tell you that low-dose augmentin did nothing for our ds, but when we cranked that up to treatment dose ("Saving Sammy" dose of XR), it started working wonders, and he's been making progress ever since. So I'd make sure that the abx dosage is treatment-level, and sustained for long enough to maximize the chances for results. Impetigo can be caused by GAS, so that might very well explain the flare of symptoms. For our ds, every flare became harder to treat / resolve. Hope you see progress very soon!

Dr. K always administered benadryl before each day of IVIG for our ds. Depending on the situation (symptom severity), he will sometimes administer a steroid (decadron IV, I think?) afterward. Don't know if this is standard for other docs. He also infused dextrose fluids before and after the IVIG (since Gamunex is incompatible with saline).

Our PANDAS ds was positive for band 41 on the IGeneX Western Blot (IgG and IgM).

The woman who runs the PANDAS Network web site (Diana P) was one of my family's "forum saviors" in the early days here, when my wife and I were completely overwhelmed by what was happening to our ds. From what I see on the site, she's basing this guidance on the opinions of Dr. Rosario Trifiletti of PANDAS fame, who used to be a member of this forum as well. Here's the link on the web site to his specific comments on this topic: http://pandasnetwork.org/wp-content/uploads/2010/09/Lyme-testing-remarks.pdf The way I read this, he does encourage Lyme testing in endemic areas and does this routinely for his patients, but he favors the standard CDC Lyme Western Blot. He doesn't say that IGeneX is invalid, just that it's so sensitive that (in his opinion) it generates too many false positives. Based on his own patient stats (200+ PANDAS patients), he's found that symptoms and the clinical picture are more valuable for distinguishing Lyme from PANDAS than the tests are. Dr. T was a valuable contributor on this forum for a time, and you may still come across some of his old posts in the Pinned Topics area. Here's some more info on him and his practice: http://www.site.neurokidsr.us/Staff.html Dr. T always seemed reasonable, open to competing points of view, and eager to pursue new lines of diagnosis / treatment for all of these PITAND kids (the broader category that can encompass PANDAS, Lyme, and other stuff in between!). I don't think he intended to dismiss the importance of pursuing Lyme testing, just emphasized that they (like the PANDAS tests) are not that reliable at this stage of the game. And here's another plug for "Cure Unknown": haunting, poignant story of how utterly narrow-minded and political our healthcare system can be, especially in embracing new diseases. It shocked me and resonated (painfully) with our parallel experience seeking local treatment for PANDAS!

Could be tonsilloliths - our PANDAS ds had that. http://www.webmd.com/oral-health/tonsil-stones-tonsilloliths-treatment-and-prevention

I would respectfully request that we drop this line of discussion and get the topic back on track in terms of answering the original poster's question. People on both sides of this debate are passionate, and things get misconstrued that cause hard feelings... but Pandas16 has already graciously apologized for any offense she may have caused on this thread (see Post #53). As an actual "PANDAS survivor," her perspective is invaluable on this forum, and the war wounds she's suffered understandably make this discussion very personal. I've seen this debate flare repeatedly on here, and it tires me out. I believe folks on both sides have good intentions and are sincere, but I can point to past posts that have been equally painful for us "classic PANDAS" folks. In particular, I recall one post from a new member in the early days of Lyme presence here (before ACN spawned a separate Lyme forum) where the poster actually stated that someday, the medical community will realize that all PANDAS is really misdiagnosed Lyme disease. At the time, this disturbed me profoundly. I didn't respond - didn't see any benefit - but that statement haunted me for weeks. Just as Lyme folks have experienced, those of us with PANDAS-afflicted children have had to battle fiercely against the medical establishment denying the existence of PANDAS, refusing to treat it, dismissing it as "bunk," etc. This forum has been the one safe haven where we can take refuge from that exhausting fight and commiserate with others who accept the reality of the disorder. We should not have to fight the same battles on this forum. Sharing info is healthy. Debate is healthy. Both PANDAS and Lyme are complex disorders with no conclusive diagnostic tests and significant symptom overlap. But let's agree on one thing: they both do exist. Since the medical community can't agree on how to tell them apart or when to test for what, it's no wonder we struggle with those issues here! So - for those of us who did pursue Lyme testing - can we get back to sharing "What made us think of Lyme?" No, you did not express it in those words. And I don't doubt the sincerity of your opinion or your personal experience - with PANDAS. However, it was made very clear that you hold a large amount of skepticism in regards to Lyme - just not how far it extends. That's fine - you're certainly as welcome to your opinion as anyone. It's the certainty with which you express it that is frustrating. Even the majority of experts on the subject of Lyme do not speak with the certainty that you do - and they have years of study compared to your ... glancing interest? Have you ever been bit by a tick or tested for Lyme? The only Lyme experience you mention is having looked into the subject for a brief time. The OP stated that her child was only just recently bitten so it's not like she has had the opportunity to wait & see if the PANDAS treatment is going to eventually fail. But I would think we would all recognize that as an opportunity that her child can't afford. From what little I have been able to learn of Lyme so far these last few months, Lyme treatment is *more* aggressive than PANDAS not less - it appears that Lyme treatment is not generally likely to allow strep to flourish nor encourage auto-immunity even if it did miss that mark; whereas, several of the PANDAS treatments can allow Lyme to do so. Multiple co-infections means that a person can be a PANDAS *and* a PITAND. It's not like strep makes you impervious to borrelia. In fact, it appears to be very much the opposite. Go ahead & express your opinion & experience - just be fair & respectful enough to be honest about their limitations. Please treat the Lyme parents with the same respect you would like to be granted by PANDAS skeptics. Don't take it so personally? I have no choice - Lyme has claimed my son & I'm fighting for his life. Your experience with PANDAS surely has taught you that it doesn't get much more personal? And as much as I dislike conflict, if there is anything that I can do to spare anyone else from going thru this nightmare, I will do so. I would think those affected by PANDAS would be the first to empathize.

Hi, Ziva: We went through a similar quandary not long ago, so I thought I'd chime in as well. More detail is available on this thread: http://www.latitudes.org/forums/index.php?showtopic=11408 So - in a nutshell - our ds seemed like classic PANDAS and was diagnosed with PANDAS by a local LLMD (originally SC, later PANDAS, after he initially suspected Lyme). Ds was doing well and making steady progress on traditional PANDAS treatments (IVIG, "Saving Sammy" dose of augmentin XR). However, the rest of our family had chronic high ASO titers. All of the recent posts on this forum about Lyme, Myco p., and other secondary infections made us paranoid enough to get our whole family tested for Myco p. and our PANDAS ds tested for Lyme / co-infections. Turned out that all of us were negative for Myco (whew!). Our PANDAS ds's IGeneX results were more complicated, though; some borderline positives and mixed results. So we ended up going to another local LLMD (our original LLMD passed away in 2008) to help us interpret the results and chart a course. He agreed with the PANDAS diagnosis and advised us to "stay the course" with the existing treatment (augmentin XR). So - for us - this provided enormous relief. A Lyme expert confirmed that we were on the right path, and he's become our "go-to" doc locally because he's a great guy and understands infection-triggered illnesses like Lyme and PANDAS/PITAND. This gave us an invaluable local medical resource and precious peace of mind! We continue to believe that our ds is "classic PANDAS," but we have somebody local whom we can count on in the event that PANDAS treatment stops working. Dr. K is our out-of-state PANDAS expert, and we did 3 rounds of IVIG with him in Chicago. We love him: he started us on the "Saving Sammy" dose of XR when we begged for this, and he's one of only two docs our PANDAS ds ever liked! But - as Dr. K told us himself - he doesn't know it all and learns something new from every patient. So we're glad we got the Lyme and Myco p. testing done, as a precaution. And we're glad we found a local doc (the LLMD) who "gets it" when it comes to these types of disorders. The IGeneX testing isn't cheap, unfortunately, but if your insurance will at least partially reimburse, it may be worth it. (For any parent in this situation, hard to put a price tag on peace of mind, eh?)

As I understand it, GAS does continue to be vulnerable to penicillin-based abx in vitro, but doctors / researchers acknowledge increasing failure rates in actual patients. There are a number of theories as to why - strep going intracellular, strep forming protective biofilms, etc. - but nobody knows for sure. FYI: didn't know how to reflect this in the poll responses, but for our PANDAS ds, the dose of abx was as critical as the type. Our ds continued to contract GAS while on the original augmentin prophylactic dose of 500 mg daily. When we increased that to 1000 mg of aug XR twice daily, he stopped getting strep and started to recover. He still reacts to exposure (such as when his little brother had strep recently), but not nearly as severe a reaction as before the abx dosage increase.

Just wanted to share this update. As I posted on another thread, our wonderful new LLMD agreed without hesitation to prescribe another month of clindamycin for our youngest, based on the dramatic spike in his ASO titer. (Actually told us "seems like a no-brainer, doesn't it?" LOVE this guy!!!) So guess what? Within 10 days of our youngest (carrier) starting the clinda, our PANDAS ds began improving dramatically! The cognitive fog cleared, headaches abated, dizziness and nausea gone, etc. More importantly, he began plowing through his homework again and doing well on quizzes / tests. What a relief! Of course, our family doc will dismiss it as coincidence - again - but it's nice to know that the LLMD is fully supportive. Ten years from now, I pray that there will be a clear, unambiguous, accepted medical "standard of care" for PANDAS / PITAND so other poor kids won't have to fight for treatment every single freakin' time....

This is AWESOME! LOVE this kind of post. Thanks for sharing some precious positive energy, tampicc!!!

Thanks for posting this. I have Crohn's... will have to check this out!

Broke my heart to see your post - you've provided so much inspiration for so many of us on here. So know this: you beat the damned PANDAS before, and you will beat it again!!! This is just a temporary setback. I know not far into the future, I'll be reading a celebratory victory post from you. Will be praying for you until then!

I have no doubt that this could also be a Lyme symptom... but it's definitely on the "ARF/SC/PANDAS" spectrum as well. This was our ds's original symptom: pain, muscle weakness, difficulty walking. It's considered a classic symptom of acute rheumatic fever. The joint pain that moves from joint to joint is called migratory polyarthritis (we were told) and the generalized pain all over is called arthralgia. Our son had both at various times. Post-GAS autoimmune conditions also include reactive arthritis, I believe, which can cause similar migratory pain. So strep could definitely be the culprit, as could other infections.

Hi, Wilma: I know this wasn't what you had in mind... but I can tell you that all 3 of our ds's IVIGs felt like "emergencies"! He was utterly incapacitated at the time, and we were just hanging on by our fingernails, trying to survive until the procedure dates. The procedures themselves were pretty traumatic: at one point during 2 of the 3 IVIGs, I was terrified that we weren't going to make it through. Thank God for Dr. K and his seasoned staff. They managed to make it happen all 3 times, despite the challenges. I know that no parent wants to rush into IVIG for many valid reasons (risks, costs, etc.). But - based on our painful experience - I'd recommend not waiting until the "emergency" point if it's at all avoidable. Makes the process traumatic for the child and for the whole family, as well as challenging for the service providers. (And if they're not as seasoned as Dr. K's staff, they may throw in the towel... we ran into that with one "aborted" attempt at a local IVIG.) Prayers and best wishes to you!!!

As somebody who's been on here since summer 2008 (when our son had his "exorcist syndrome" overnight PANDAS symptom explosion), I can say that Buster's contribution has been enormous. He's been patient and generous in clarifying some of the trickiest aspects of the science around PANDAS, and the links below contain invaluable info that he distilled from his exhaustive research, then graciously refined with feedback from the whole online community. I miss his posts... but I'm awfully glad that things are going well enough that he doesn't have to live on this forum anymore! I don't spend as much time posting as I used to, because so many others post responses that cover everything I could have offered. But I still read the new posts almost every day (my addiction, I guess). Thankfully, our ds is doing much, much better now... but he's not 100% yet. So I'm always interested in new developments, links to new research, and shared results of new treatments. Mostly, though, I feel an obligation to check in regularly in case I can help somebody else the way so many helped us. When things seemed hopeless in 2008, folks on here like Buster, EAMom, Diana P, and others provided a lifeline. They pointed us in the right direction time after time, when local docs had nothing to offer us. They kept us sane when my wife and I felt like our world was crumbling. I honestly believe that this online community saved my son and our whole family (kind of sappy, but it's true). I want to return the favor, at least to the extent possible. So a lot of us "old-timers" still lurk on here but aren't as vocal as we used to be. And some have moved on, because the posts can be painful reminders of the darkest days of their lives, too traumatic to relive.

I think he would have been helpful with respect to treatment, but we didn't pursue this. At the time we did the PET scan, our son was at his lowest symptom ebb (after 9 months of amoxyl prescribed by our original local LLMD). (Makes ya wonder if the PET scan still showed inflammation even though he was in "mostly remission" at the time, eh? Wonder what it would have shown during the "dark times"?!?) We just did it for confirmation, I guess, and in the hope that it might aid research that could benefit other kids in the future. Several months later, when our son had his overnight "exorcist syndrome" exacerbation, we were pretty much freaking out... but folks on this forum recommended Dr. K in Chicago as the most experienced doc for PANDAS. Chicago is just as close as Detroit for us, so we went that route. Dr. C has been great in terms of trying to get us in with local ped neuros and in answering e-mail questions, though. And I believe several families on here (Mustang Carole?) have had good experiences with him for treatment of their afflicted kids. So WD, has Dr. Chugani been of any assistance with respect to treatment, or is he really just in it for the research?

We also did an MRI in our ds's early (pre-diagnosis) days which showed nothing except a sinus infection. We were lucky enough to participate in Dr. Chugani's PET scan research study, which confirmed inflammation in the basal ganglia: http://www.latitudes.org/forums/index.php?showtopic=5704&view=findpost&p=42788 http://www.latitudes.org/forums/index.php?showtopic=12535&view=findpost&p=104611 We live in Michigan (Dr. C's state) but found out about his study via another forum member here. Don't know how widely the PET scan research study has been advertised? This is really interesting; please do keep us posted on the test results. Is this something you decided to do on your own and you sought out Dr. Chugani, or did your doctor/pediatrician suggest it or even make the arrangements on your behalf? Are you actually participating in a formal study of Dr. Chugani's? Thanks for sharing!

Yeah, I'd interpret it the same way you did. High CaM K II indicates high probability of infectious cause. As I understand it, that's what Dr. C's research shows.

You may have already found this... but Buster's PANDAS FAQ does contain some concise info about the Cunningham tests and CaM kinase II (check the section titled "Tests: Antineuronal Antibodies Tests"): http://www.latitudes.org/forums/index.php?showtopic=6266 And here's a fascinating old thread started by Dr. T (when he was an active member of the forum) about the signficance of the Cunningham tests from his perspective. Buster weighs in toward the end of this thread (Post # 33): http://www.latitudes.org/forums/index.php?showtopic=7228 Hope that helps!

Huh - this wasn't our experience, Wilma, or what many other parents / clinical experts have reported. Dr. K always told us that IVIG was generally more effective for PANDAS kids where OCD was their major symptom, while PEX was generally more effective for kids where tics were the major symptom. Our son had severe, debilitating OCD (and constant all-nighters, terrible sleep problems) before his 1st IVIG. We saw dramatic improvement in both OCD and sleep within the 1st 2 weeks following the procedure. So - certainly every child and every experience is unique - but I believe there is lots of evidence that IVIG can help significantly with PANDAS-related OCD. Don't give up hope!

Hi, emmalily: Our ds (14) has also complained periodically of pain, tingling, numbness in his hands and fingers. We always chalked this up to the RF / reactive arthritis aspect of post-strep autoimmune disorders. When he 1st got sick, this was his most notable symptom: migratory polyarthritis, muscle weakness, etc. Anyway, he still sometimes has mild issues with this, but it's almost disappeared as he's recovered over the past 18 months of "Saving Sammy" dose of aug XR. In the early days, chiropractic did seem to help his general joint / muscle issues (at the time, he had severe pain in his neck and back as well). Good luck!

Amen, MomWOS! I completely agree, as does Dr. K: he told us he believes we're on the brink of a paradigm shift in the treatment of mental illness - especially pediatric mental illness - that will transform healthcare. I think that's why the "PANDAS Hypothesis" has experienced such violent opposition. It has the potential to invalidate some of the traditional psychiatric treatment regimens, as well as the strict separation between neurology and psychology/psychiatry, and that seems to upset a lot of docs who are comfortable with the "old paradigm." As far as our ds goes, I'm 100% sure he has PANDAS in that GAS is a clear culprit in his exacerbations. With all of the myco P. and Lyme revelations of the past year, though, I'm no longer 100% sure that GAS is the only culprit.

I'm interested in the homework angle, too. Our ds is doing so much better than during the "dark days" 18 months ago, when OCD held him prisoner in 2 rooms of our house and made him wear latex gloves constantly and go thru 4-5 cans of Lysol a day. But - over the past month - he's struggled tremendously with school and homework. He missed 3 full years of school prior to this year. Right now, he's sometimes only making it thru an hour or so of school before calling to have us pick him up. He can't get thru the homework for his classes - says it drains him and that he "can't do it, just can't." Please pardon the bragging Dad mode here... but - at the end of 5th grade - we got a letter notifying us that he'd been identified by the Northwestern University Midwest Academic Talent Search (NUMATS) as a candidate to take some college-level courses at our local university. Now, he struggles to manage 15-30 minutes of 9th grade homework at a time. This is the lingering symptom that still plagues him. A wonderful woman on a Sydenham's Chorea forum once told us that it's like somebody has taken the card catalog in the afflicted person's "brain library" and tossed it up in the air. All of the books are still on the shelves, but you can't find them. Has anyone's PANDAS child described a phenomenon like this?