Worried_Dad

Oh, man... I loved this!!! Dr. T, you definitely get the "Perfect Analogy of the Day" award today!

Hah - just have to outlive the naysayers, eh? The problem is, the folks who are afflicted now can't afford to wait for the next generation to settle the controversy. Seems like paradigm shifts in medicine are like continental drift: they reshape the world, but they take a really long time to do it. Anyway, I guess I should remember that Barry Marshall's story had a happy ending. The good guys won, the critics were proven wrong, and his theory did become "accepted medical wisdom" eventually. By coincidence, I heard a segment on NPR this morning about a new book ("Asleep") that describes the mysterious epidemic of "encephalitis lethargica" that struck worldwide in the 1920's. The author mentioned that this illness - believed to be triggered by a viral infection - caused inflammation in the basal ganglia that resulted in extreme, rapid-onset psychiatric symptoms in afflicted children. Millions were institutionalized as a result. So, with all the precedents, why do so many docs look at you like you're a lunatic when you suggest that infection might be triggering your PANDAS child's neuropsych symptoms? I just don't get it....

Wow - this is interesting. I posted before that our son at the age of 6 had a strange, unexplained infection that dropped his white cell count precipitously (to the point where the family doc was worried about leukemia). Main symptom: he could not walk for several days, and we had to carry him around the house. We were scared to death. After a week or so, his white cell count started rising again and the doc just shook her head, saying she did not know what kind of infection it was but he was apparently fighting it off. Dr. K told us he strongly suspects that kids like our son who are diagnosed with PANDAS after age 10 actually had undiagnosed, milder bouts of it at an earlier age. My wife and I wonder if this "mystery infection" at age 6 was really the start of our son's PANDAS journey....

Good point - there are some hopeful signs lately, aren't there? Maybe the tide really is turning, and our kids' painful experiences will ease the pain of future PANDAS children. Thanks for the "glass half full" perspective. I needed that!

Came across this in the March issue of Discover Magazine and it almost made me physically ill. It's an interview with Dr. Barry Marshall, who shared a 2005 Nobel Prize for proving that H. pylori causes ulcers and stomach cancer. Of course, the medical establishment beat him to a pulp for years before accepting his results. Here's an excerpt from the interview's intro. When will the medical establishment learn from their own tragic mistakes of the past? When will they temper their arrogance with some well-earned humility? I know there are plenty of good guys like Dr. Marshall on the front lines of PANDAS - Dr. T, Dr. K, Dr. L, Dr. Cunningham, Dr. Leckman, etc. - who are fighting the good fight despite implacable opposition. But it's disheartening to see that this same pattern of narrow-minded denial seems to play out again and again while innocent patients (like our children) suffer. Sigh....

AWESOME news, Mom!!! Our son's on a similar healing path with the Saving Sammy dose and is also 13. Ain't it great to just deal with the normal headaches of raising a teenager and not the PANDAS migraines? (Okay, maybe not great... but pretty good. ;-) Hope your son's teenage years herald a bright, PANDAS-free future!

Great idea, Laura! Sounds like a job for... (Myth)-Buster!!! (I'd pay big money to watch a "mental cage match" between Buster and Kurlan on PANDAS. No contest.)

Just wanted to post a huge "thank you" to the members of our online community who recently participated in internet radio interviews with Terri Arranga on the Autism One : Conversation of Hope series on PANDAS. Finally managed to finish listening to 'em, and they were great! And I noticed several mentions of the ACN Latitudes forum to steer newbies to a safe harbor. So: Dr. T, Lynn J, Laura M, you did a wonderful job representing PANDAS and the community. Thanks a million!

Feel like I've repeated our story ad nauseum and regulars on here are probably sick of hearing it! But here's the IVIG part again in a nutshell. Summer 2008 - our son's PANDAS symptoms explode (Exorcist Syndrome) and we're afraid we'll have to hospitalize him. We do IVIG with Dr. K (1.5. mg/kg over 2 days) in October 2008 after partial "treatment dose" of zithromax (10 days @ 1000 mg daily, per advice on this forum) followed by 10-day treatment dose of augmentin (1000 mg daily, switch per Dr. K). See 70% improvement over next 2 months and think the nightmare's over. Wrong! Other boys bring infections home, our PANDAS son has several milder flares, then major (worst ever) exacerbation again in March 2009, OCD completely crippling. Throughout the time when "flares" were occurring post-IVIG round 1, we were on augmentin (500 mg daily - standard Dr. K maint dose) for prophylaxis. Summer 2009 - can't find anyone local to work with Dr. K and order in-network IVIG, so we go back to Chicago for rounds 2 and 3 with Dr. K (1.5 mg/kg over 2 days, 28 days apart). This time, only minor improvement (20-25%) in the 4 months following round 2, 3 months following round 3. We're desperate. Beg Dr. K to try the "Saving Sammy" dose of XR for our son and it works miracles: he starts shedding OCD behaviors at a steady rate and after 4 months on this dose is up to 85%, best he's been in 3 years. So I voted "improved but relapsed." I can't honestly say how much help the 2 rounds of IVIG last summer were, and whether they "set the stage" for the rapid progress on augmentin XR (2000 mg daily). Here's a parent's (non-scientific) gut instinct: our son was still harboring strep somewhere inside him and/or caught it again after IVIG round 1. IVIG is definitely helpful but extremely expensive. If we could do it over again, we'd make sure our son was on the high-dose augmentin XR first, then do IVIG to get maximum benefit.

I sense a vanity license plate in my future: PNDZ SUX Thanks for the inspiration, Moms!

Beth M told me that Sammy started Strattera while he still had some OCD issues. She felt that it helped him "overcome the final obstacles" on his road to recovery, including some of the big rituals that had become very ingrained behaviors. She thought it made a big difference for him. We're going to explore this option, at least, with our local DAN doc and/or Dr. K. Seems like it's worth a trial.

I'm surprised that one hasn't already been taken... about a thousand times! (No offense intended to any black-n-white bears out there....)

Good point about remission: our son is following the Sammy Maloney example and has similarly improved dramatically on the 2000 mg daily augmentin XR, but I don't know if it's really a "cure." What I do know: if he gets back to baseline and can control future strep exposures with a shorter term of XR, I'll settle for remission over what we've had for the past 3 years! As far as the Stattera goes: we're considering that option, too. Six months ago, the OCD was so overwhelming that all other symptoms pretty much faded into the background. Now - after 5 months of XR - the OCD has diminished to the point that the ADHD stuff is much more noticeable. Our son now complains that he can't sit still, can't do just one thing at a time, can't focus or concentrate for long. Before PANDAS, he was our "sit quietly and read a book for hours" kid - opposite of ADHD. So I strongly suspect that the ADHD is due to PANDAS, for both Sammy and our son... but who knows with this darned disorder!

That's the million-dollar question! We had no luck with local docs as far as abx went. But Dr. Latimer is one of the experts: I'd call her office and let them know that your son has regressed since lowering the augmentin dose and tell them that you really want to go back to the higher dose to see if that reverses the trend. I'd expect Dr. L to be open to this. And if your son does gain ground on the higher dose, that gives you more ammo to request that the 2000 mg / day of XR be continued for a longer time (or resumed if his condition worsens again in the future). Good luck! Thank you for your reply. Yes, the steroids were tapered down. He will finish this Friday. He seems a little better this week then last, but still has this new counting thing. If we keep him busy and his mind active doing something he seems better, it is when he has time on his hands, that he get frustrated. We are a homeschool family, so we (me and the three boys) are with each other 24/7. So if everyone thinks the augmentum should be put up again, how do I get the doctor to listen and do something???

Hah - thanks for the chuckle, Dr. T! I'd vote for PANDEMICS. It works on so many levels... and maybe it will scare folks into realizing it's more widespread than they realized!

I think "sensory defensiveness" is a classic PANDAS symptom. After 1st exacerbation, our son was hyper-sensitive to pretty much everything: sound, light, smell, taste, touch. Any loud noise would provoke a startle reaction: major "fight or flight" response, as you said, probably due to anxiety levels cranked up to max. In the midst of exacerbation, we didn't find anything that helped other than avoiding the stimuli. Tried OT (sensory integration therapy) for a while, but not much help.

Diana, once again: U ROCK!!! Don't know where my family would be right now if not for all your guidance over the past few years... probably in adjoining padded rooms. Thanks so much for going the extra (few thousand) miles to champion the cause of PANDAS kids and families. Hope you're getting some rest and relaxation once in a while!

Yeah, our son's symptoms started with joint pain, muscle weakness, difficulty walking, then seizure-like episodes of adventitious movements. He was eventually diagnosed by a wonderful local DAN doc with acute rheumatic fever / Sydenham's chorea (later changed to PANDAS). We were scared to death of heart damage, too, because our son complained of chest pain and racing pulse, but the echo turned out fine. And - in the very early days of this - my wife actually suggested rheumatic fever to our (former) family doc because the WebMD online symptom checker suggested it. He just blew her off, saying "that's so rare, nobody gets that anymore." Sigh.... Even if it's an established, uncontroversial diagnosis, it often still gets ignored.

Hey, Mom! He's doing very well - OCD contamination fears (which were utterly crippling, 3 cans of Lysol and a dozen pairs of disposable vinyl gloves a day) are basically gone. Main challenge now is memory and focus: he's struggling with homework still, which used to be easy for him. Honestly, after the nightmare we were in prior to the "Saving Sammy" regimen, we're just planning to follow Sammy's example. Beth M told me he was on the 2000 mg daily XR for a full year, then 1000 mg daily for another 3. That's our plan for now, since our son's experience has coincided so much with Sammy's thus far. How about you?

Very helpful info, thanks! (And I'll try my best to avoid a "novel"...

Hi, Sheila: Any general word length or other submission guidelines you would like us to follow?

Sheila, I hope my post made clear how grateful I am to you and ACN for making this forum and other resources available. It literally has been the source of all of the most useful info on PANDAS we've found; and it's led us to the researchers and doctors who have helped our son the most. (And I bought "Natural Treatments for Tics & Tourette's" from this site a while back - great book!) I know there is still controversy surrounding PANDAS, which - to present a balanced view - Latitudes Online was representing. Without doubt, more research is needed, and there are many questions to be answered. It's the NIMH FAQ that really causes heartburn for many of us "PANDAS parents," I guess, because NIMH carries so much weight and their PANDAS page has been static and out of date for such a long time. (There have been a number of threads on that topic on this forum over the years; sore point for many of us, I think.) So please accept my apologies. ACN has done us all a great service, and I appreciate that. I also greatly appreciate the offer to share our stories in Latitudes. I'll try to put something together (and keep it brief, not my strength to send you soon. You might consider reaching out to Dr. Rosario Trifiletti, too, who is a member of this forum / online community and also a leading clinician in the PANDAS area (has published journal articles on the subject and been interviewed on the Today Show on this topic). He could doubtless contribute some valuable insights if his schedule permits. And as far as the other topic goes: wow, I am so sorry to hear that any members of the PANDAS forum have caused extra grief or pain for folks here that are already suffering! I can only assure you that I've never personally diagnosed someone via post or insisted that they or their child have PANDAS; I'm totally unqualified, and I know it. I've just tried to help answer questions and shared my own son's and family's experience, nothing more. I promise to do my best to be a supportive member of this online community and not a source of pain. If I caused any pain or grief on this thread, then I messed up. I'm sorry!

No worries, Chemar - you did the right thing. Making this forum aware of relevant content was thoughtful! And I in no way meant this as a complaint about you sharing this. I'm glad I finally subscribed officially, after all the invaluable help I've received here from you and others over the years. Sorry if I communicated that poorly. My bad!

It is so nice to have an expert PANDAS clinician on here, sharing this kind of valuable info. U rock, sir!

Okay, I subscribed and was glad to do it. I am extremely grateful to ACN for providing this wonderful forum for PANDAS parents (and doctors like Dr. T) to share info. It's been a lifesaver for us; without it, our son would probably be in a hospital now. So please don't take this as ingratitude, ACN folks. You've done us all a great service by providing this forum! But... sigh... I eagerly accessed the Latitudes Online magazine to see the PANDAS articles and was deeply dismayed. The 2009 Research Abstracts summary lists many that still question the existence of PANDAS - concluding that it remains "elusive, controversial, unproven" - including articles by prominent PANDAS nonbelievers like Singer and Gilbert who have caused major heartache for PANDAS families on this forum who have sought their help. And yet it does not even mention the most groundbreaking research of all published in 2009, the Columbia University study that essentially re-created PANDAS in a mouse model. Then I follow (with curiosity) the link labeled "NIMH on PANDAS" which is parenthetically dated 2009. This page again contains the (tiring and disappointing) disclaimer that has hampered so many of us as we sought treatment for our children: that PANDAS is "a condition for which diagnosis and treatment remains controversial." And this article - copied from the NIMH FAQ page - may indeed have been updated in 2009 cosmetically, but it mostly contains the same old, out of date, and inaccurate information that has been on the NIMH site for years and has hampered so many of us when seeking treatment. For example, it still states that PANDAS should be treated like any other case of OCD or tics, with psych meds and CBT therapy. We (like so many others on this forum) tried this for our son, repeatedly: not only didn't it help, the meds made things much, much worse. And this NIMH FAQ still asserts that there "isn't enough evidence to recommend the long-term use of antibiotics." What?!? Without "Saving Sammy" and the regimen of long-term, high-dose augmentin XR, my son would still be utterly incapacitated by extreme OCD. Dozens of parents on this forum have chronicled the significant improvements their children experienced on long-term treatment doses of abx... and their decline as soon as those abx were discontinued by docs who relied on the NIMH info cited here! Please accept this as constructive criticism, not an attack on ACN folks who have done wonderful things to support parents and kids with classic OCD, Tourette's, tics, PANDAS, etc. But - after all the battles we and other families have had to fight with healthcare professionals to overcome this kind of stale info on PANDAS - it is disappointing to see the NIMH FAQ simply reproduced verbatim in Latitudes Online, with no context, no critique, no observation of how out of date it is. Heck, the IVIG / PEX section still cites articles that are more than a decade old (1999, 2000) and cautions against risks / side effects that have been reduced dramatically in the past 10 years. I may be overreacting, because this is such a painful subject. Having to "dispute" the NIMH stuff to local docs who use it as gospel and ignore the more recent research, having to spend a full year searching for anyone local who will even try to help our son, makes me pretty sensitive to this topic. Latitudes may be trying to stick to the published NIMH guidelines and peer-reviewed journal articles, but we can get that from many other "traditional" sources. Given that ACN provides a forum for more realtime info-sharing, it would be nice to see some of the mounting "anecdotal" evidence reflected in it. Maybe interviews with the leading clinicians and researchers - Dr. K, Dr. T, Dr. L, Dr. Cunningham, etc. - to share their real-world experiences in this field and their absolute certainty that PANDAS is a real clinical entity? Maybe mention of "Saving Sammy" and the groundswell of publicity it's inspired? Sorry to whine. I'm just so tired of hearing that PANDAS is "controversial" because it's not to our family, after what we've been through for the past 3 years. And I didn't expect to see that same phrase repeated in Latitudes.