Buster

Thanks Tenacity, this is great. I'll incorporate in next round. Buster

This was there before. What really annoyed me was the site update did not address the controversy section. I would have loved a section like: Q: What is the controversy in PANDAS? A: The controversy in PANDAS is really 4 things: a) whether strep infections cause PANDAS or children with PANDAS just have more strep infections B ) whether the production of anti-neuronal antibodies are genetic or a byproduct of a particular strain c) whether colonization is sufficient to trigger anti-neuronal antibodies d) whether PANDAS is only triggered by untreated strep infections or also triggers for treated strep infection (d) is by far the most important because the studies keep breaking the blind to "treat" strep infections. This would be like trying to prove a relationship between strep and acute rheumatic fever and treating anyone you see with strep and then complaining that your study was underpowered because you found no ARF. Literally that's what's going on in the controversy. I suppose an (e) is that researchers at Johns Hopkins can't seem to repeat a test run elsewhere. I suppose you could doubt either party, but I sure wish we'd get funding for replicating the research rather than just letting both parties fight it out in papers. Buster

Here's one on people's experience with medication -- please treat this appropriately -- the survey data is way underpowered for any real conclusions here. I didn't pull dosage or duration or anything else and people have lots of different co-morbid conditions. Still, interesting trending and I'll see if we can get more from it. Buster

Another cool diagram Of particular interest seems to be the reported difference in some symptoms post-antibiotics: * urinary issues * separation anxiety * age inappropriate tantrums * sensory issues Vocal tic was interesting because it seemed to arise after intial episode. Very hard to tell the strength of the correlations here because of the age spread in the data, but interesting.

Hi Folks, Here's one chart from the survey I thought I'd share. This does show that pediatricians are the key. Buster

Do you see a way to structure a separate question that would have made it easier to answer? I added "other" on a lot of questions specifically to get at what you are raising, but also realize it isn't obvious where to put data. I'm essentially looking at "others" to see what should have been in the original question or might lead to another question. My biggest concern is making this too complicated to fill out. Please let me know if there are questions that are still struggles. Someone just pointed out a huge hole in the survey where I didn't ask about the timing of the Cam Kinase II draws (i.e., was the child in an exacerbation), were they already on antibiotics at the time of the draw, had any immunomodulating treatment been done. Another great comment was the confusion about which episode the data is for and confusion about the shape of the ramp of symptoms. I'm trying to fix that one in the survey. Buster

Well, I found another problem. I meant to ask what were the symptoms at time of Cunningham blood draw -- unfortunately looking at the notes, many had Cunningham draws outside an exacerbation. Thanks to all who pointed this out. I think we're getting close on the questions. The other recommendation was to be very specific on terms. Anyone have suggestions for definitions? 1st episode (in retrospect) triggering onset -- i.e., the one that caused you to seek help exacerbations pre-antibiotics/treatment exacerbations post-antibiotics/treatment Anyone have some terms here that might help unify terminology? Anyone found a paper that defines the patterns? Buster Hi, yes This was really hard to phrase. I meant that if the initial event subsided (presumably with intervention like antibiotics) and then you had a recurrence/relapse, what happened then. I just couldn't figure out how to ask the question. I'm trying to see if symptoms differ in subsequent episodes or are mostly the same symptoms at different intensities. Buster

Hi, yes This was really hard to phrase. I meant that if the initial event subsided (presumably with intervention like antibiotics) and then you had a recurrence/relapse, what happened then. I just couldn't figure out how to ask the question. I'm trying to see if symptoms differ in subsequent episodes or are mostly the same symptoms at different intensities. Buster

I think I've incorporated all the feedback from the prior thread on the PANDAS survey and have started a new collector. Please try to fill out the survey again. I'm sorry for having you go through it twice. It was very difficult to get some of the questions right. The survey is at http://www.surveymonkey.com/s/PANDASSurvey2child1 Other children can be entered by replacing the end of the URL with child2 or child3, etc. This survey has 27 questions. If you have more comments please reply here or on the last question of the survey. The feedback and suggestions have been outstanding. This is a bit more complicated, but I hope it will not take longer than 15-20 minutes. There are many great comments that I haven't been able to act on yet. I'm working on them, but please repost here if something is off. Thanks, Buster

I can actually run those cross correlations and will study that on the data already collected. Once I get the questions more "right" I'll rerun the survey (sorry to those of you who are tired of surveys) but frankly this is one of those unique moments where each survey is likely getting us closer. I tried to make this one simple to get right so the crosscorrelations would be meaningful, but it's still not catching the migratory pattern of symptoms. It's amazing how many of the scales think the symptoms are constants. This must have frustrated the heck out of Swedo as she tried to explain sawtooth to folks. Buster

That's a fantastic Idea... will do

Thank you everyone. We have some 60+ responses at this point. I've posted initial results at: http://www.surveymonkey.com/sr.aspx?sm=HJlwfEnDARsXJ5S_2fSwCVBCIrdtKJdXjluik7YIID2Xo_3d Great feedback on this forum and in the survey. I'll collect a few more samples today and then freeze the survey and post a request to retake it after I fix all the things wrong with this one. What is so amazing is having 60 people help edit -- great comments. I'll post a new survey after I fix the questions. Please post additional comments here like: "make question #11 have multiple choices" or "please add sleep issues to the list of symptoms in question #..." etc. The more precise you can be on the edit, the better. I really appreciate the help. I'll post some of the results (faulty though they are) in a moment. It was pretty fascinating to read through. Buster

** Shifted discussion to http://www.latitudes.org/forums/index.php?showtopic=9319 ** Hi Folks, I've started a fresh survey at http://www.surveymonkey.com/s/PANDASSurvey2 This survey has 26 questions and I think has incorporated all the great feedback from the prior survey. If you have more comments please add here or on the last question of the survey. I tried to combine a lot of different content into one survey but didn't want to make it too long. Summaries from August 1st survey are at: http://www.surveymonkey.com/sr.aspx?sm=HJlwfEnDARsXJ5S_2fSwCVBCIrdtKJdXjluik7YIID2Xo_3d Buster

I'm presuming you meant antidnase b and not anti DNA. Antidna is a test for lupus (sle). Antidnaseb is a titer to an exotoxin of GABHS. Elevated titers in and of themselves is not really a problem. Rising titers are meaningful. Falling titers are not studied. Some people have relatively constant titers. The term elevated is relative to age group and is not an absolute but come from sampling a 100 or so individuals who are asymptomatic for strep and measuring their blood titers. This becomes the "upper limit of normal"

Yeah, that's a huge one. Most see 3 types of eating disorders associated with PANDAS. Fear of choking. texture, taste, color/sensory issues body morphology/anorexia Get on these right away. You can get a lot of calories into drinks, but get him seen by a specialist in OCD and eating disorders. Hopefully the augmentin will help.

A single study does not good science make, but shet is one of the best studies we have. I don't know any contrary evidence. Perhaps that is the question for Beth.

Please see: http://www.latitudes.org/forums/index.php?showtopic=6265 and then Figure 6 in the article referenced within the "diagnostic tests" section: http://www.journals.uchicago.edu/doi/pdf/10.1086/377700 Dr. Kaplan and Dr. Cleary are two of the world's foremost authorities on GABHS. If you'd like an explanation of the findings, I'm happy to translate. The short summary is that even with perfect timing, they found only: 54% of children in their study had a rise in ASO (despite positive throat culture and symptoms) 45% of children had a rise in Anti-DNAseB (despite positive throat culture and symptoms) 63% had a rise in one or the other of these antibodies Best regards, Buster

Most see 3 types of eating disorders associated with PANDAS. Fear of choking. texture, taste, color/sensory issues body morphology/anorexia Get on these right away. You can get a lot of calories into drinks, but get him seen by a specialist in OCD and eating disorders. Hopefully the augmentin will help.

Hi, The best blinded study is the original Perlmutter study in the 1999 Lancet, this was a small sample study but was blinded with placebo control : http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf In terms of experience, Dr. K has somewhere around 100 cases of IVIG and has found >75% improvement in symptoms in 86% of cases when measured at 3 months. You should discuss with him or your doctor your specific case as there are items that make it more/less effective. In our case we had dramatic symptom resolution 3 weeks after IVIG which remained low for > 3 months. Best regards, Buster

you're making perfect sense and we think about that a lot. For us, it was the re-occurence of anorexia symptoms that made the choice easy. I think the points of exacerbation cause the choice points in treatment, not the calms between the storms. I am hoping we have years of calm before any other storms -- Everyone could use the break.

Yes, but also read the preceding sentence: "It is entirely possible and even likely that use of antibiotics in the early stages of PANDAS could result in a complete recovery." He's stating what he sees and generally he doesn't see a lot of the "first episode". He generally sees kids referred to him because the exacerbations are continuing and antibiotics are explicitly not controlling the disease. There just isn't enough data to know whether the course is monophasic or remitting (multi-phasic) -- but the evidence seems to suggest that unless it is the initial onset, there is a lack of return to baseline with antibiotics and with prednisone. Best regards, Buster Much like Sydenham Chorea, about 80% of cases resolve and are monophasic (only one incident). However 20% of patients have relapses and

We had all of these issues and I still can't believe the # of tests we ran. We thought it might be dyslexia/dysgraphia. The test that was most profound at distinguishing the orthographic memory issue was the Rey-Osterrith Complex Figure Test. If you have a neuropsychologist who can run the test, it was in our case a great example of why copying was so difficult. Buster

My goodness... what a thread. What I heard from Dr. K did not match this post. I get that people listened to the words, but they didn't read the slides! He said "by the time most kids see me, they have tried everything else." This means he has a skewed population that isn't particualrly responsive to antibiotics. He defines success as a 75% improvement in all symptoms and resumption of normal age appropriate behavior within 12 weeks of treatment. I know we all want more than that, but that's what he's looking at. He defines "failure" as after 12 weeks if the child does not have "75% improvement in all symptoms or cannot resume age appropriate behavior." Okay, so seriously guys, for all of us who tried antibiotics, did we achieve success in 12 weeks? In our case, I'd say no from first antibiotic. It was on our 4th that we had success 10 days after the treatment. This would mean under the terms that we had three failures of antibiotics and one success. Remember the time limit in his definition of success. I know this sounds like splitting hairs, but what he's saying is his success rate (measured at 12 weeks) is like 80% on IVIG for those he evaluates as PANDAS whereas if I take my personal data, we'd have a 25% success rate at 12 weeks from commencement of antibiotics. Even Beth Maloney who used various doses for multiple years would have counted as "failure" for most of that time because of the time window. I don't know the time from when she started high dose XR, but all the others were failures and I think it took more than 12 weeks on XR for > 75% symptom resolution. Hope this explains this. Remember success has to be defined against a time window for any statistics. Buster

Hi, yes, smartyjones' comment was the one I was referring to in my post. At IOCDF'10, Dr. Leckman started to comment regarding Dr. Murphy's research and then noticed she was in the audience and asked her to comment instead. Her reply was that she focused on antibiotics (i.e., her trials on cephlasporins) and had not used IVIG or PEX/Plasmapheresis. It wasn't exactly that there were different camps, more that different doctors were having success with different approaches. I'm not sure anyone really quite knows what's going on yet (i.e., are we seeing primarily an anti-inflammatory response? Are we seeing a dilution of Tcell activation through by shifting Th2 to Th1 response? Is IVIG blanketing Fc receptors and reactivating Tregs? Does IVIG, Augmentin or Azith have effect on IL6 production and thereby shifting immune response? Who knows. Dr. K was, I thought, very balanced in his comment. But you did have to listen carefully to him. He was highlighting that he generally gets patients by referral after others have tried many things. I so appreciate the coordinators of IOCDF making the multiple views visible. While it was a bit confusing for parents/clinicians since it wasn't yet a unified treatment plan, at the same time isn't it great that they are having success with three different approaches. That is actually more helpful to figuring things out because now one can look at "what do these three different approaches have in common." Buster

to add...can the response be good early in the day and then fall after 4-5 pm... we are usually good upon waking and as day goes on this get worse...by 7pm i want to go hide..well Not in our case. The steroid burst had a noticable effect 9 days after starting the burst. IVIG has a rough first 2 weeks and then improvement after that. Buster