Buster

Hi Elizabeth, Not that I'm aware of. There was a slide that mentioned that other autoimmune illnesses that may trigger neuropsychiatric disorders such as Lyme Disease, Thyroid Disease, Celiac Disease, Lupus, Sydenham Chorea, Kawasaki's disease, and acute Rheumatic Fever. Buster

I didn't ask Dr. K that question so his answer might be quite different from mine. However, the two papers that seem to explain the IVIG situation are: 1) A paper that dopamine suppresses Treg http://www.jneurosci.org/cgi/reprint/24/27/6133 and then 2) A paper that IVIG enhances Tregs http://www.jimmunol.org/cgi/reprint/179/8/5571 I couldn't find a paper that connected the two but it's possible that IVIG is enhancing the Treg cells and going long enough to get the whole darn system back under control and reduce the dopamine load so the regular Tregs can do their job. This is just one conjecture at this time and hopefully someone else has been tracking this direction. So PlasmaPheresis probably works by just reducing the antibodies. IVIG probably works by enhancing Treg cells that supress the bad antibody. In both case dopamine D2 receptots get less load. Buster

Hi folks, There were some really excellent talks at the IOCDF conference. I'll post some comments and maybe others will chime in. 1) I deeply enjoyed Dr. K's presentation. He was funny and a bit "out there" -- he presented that he has seen some 400+ patients with some 200+ that he identified as PANDAS and over 100 that he's personally treated. His success rate has been > 87% and he defines success as 75% improvement of symptoms at 3 months post treatment. What was fascinating was seeing the other doctors come for his talk. One of the items that might cause some on this forum concern was that he noted that "sudden onset" was a feature in 96+% of his cases. He also objected to the use of the term "comorbid" conditions and said that these other symptoms were just part of an pediatric autoimmune neuropsychiatric complex. In terms of announcements, I didn't notice any announcement in his session -- but he said that he was headed over to the NIMH to talk there - so perhaps that is where the discussion will occur. Dr. K was very strongly in the IVIG camp and not real supportive of plasmapherisis. 2) Dr L also had a great presentation. Her presentation covered the cases she's seen. She was more in the Plasmapherisis camp. Tanya Murphy also attended this talk and she was in the antibiotics only camp. It was actually great hearing the different perspectives and why each held their perspectives. 3) Dr. Swedo was not able to attend and Dr. Leckman presented her slides (as well as his own). What was extremely refreshing was that Dr. Leckman announced a new grant that was either just granted or in final stages. This likely means that the Perlmutter/Swedo study from 1998 (i.e., IVIG vs Plasmapheresis vs placebo) will be repeated. This is great news. 4) Dr. Cunningham's work was just outstanding. She presented the science around molecular mimicry and presented two slides from an unpublished study from a university in Tel aviv that was studying transgenic mice and showed antibody targeting of the D2 receptor (I think I got that right). Bottom line great work. The most amazing thing for me was seeing all the doctors we talk about together in one place -- talking to each other. I was also surprised by how complete the PANDAS track was -- it was a really good use of the day with something on PANDAS throughout the day. Whether for therapists, doctors, and parents. For me, that was the amazing thing and I know many parents on the forum worked to get the program together -- great job by the way. Regards, Buster

Just to chime in on Vickie's correct comment. Amoxicillin 1x/day has a halflife of about 1 hour. This means that by 6 hours only 1-2% of the drug is still in the system. By 12 hours it is almost non-existant. 1x/day is not a recommended dosage for curative or prophylaxis. Also, as an added complexity, a throat culture is actually a test of colonization rather than infection. You can certainly be colonized without infection and this can happen while on antibiotics. It is difficult for an antibiotic such as amoxicillin to get to the skin/mucosal surfaces. Anitbiotics rely on an intact immune system to do most of the work. The antibiotics slow down the spread of a bacteria but don't actually "kill" bacteria in the dosage typically prescribed. The dosing is aimed at helping those with intact immune systems clear an infection in about 80+% of the cases. Buster

Always a danger the session might run long :-) Buster

Was it the % or ratio that was off or the actual count. Keith

Well, CD stands for Cluster of Differentiation which refers to proteins exposed on the surface of T-cells. When you get flow cytometry, they are checking the amount or count of these proteins. CD-4 is on T-helper cells. T-helper cells tend to progress to Th2 cells that become antigen presenting cells to trigger B-cell production of antibodies. CD-8 cells tend to be direct suppressors and morph into cytotoxic T-cell (i.e., things that kill cells). So you can think of CD-4 as going to extracellular/indirect suppression and CD-8 as going after intracellular/direct suppression. CD4 and CD8 ratios are affected by things like azithromycin, progesterone, and a number of other things. Buster

I've gotten a 175 responses to this survey. I think I'll shut down the survey monkey in another week. The map is interesting. I've plotted relative to population density and it correlates (which is to be expected). That could be because: with enough samples, someone in the town is likely to have participated in the survey with enough people, strep gets to the 4-6% that has such a predisposition strep (and other triggers) tends to spread in dense areas of populations ... Buster

Hi, I updated the map with latest data. We're now at 163 results. I'll probably close down the survey soon and try to construct a better one -- I was quite impressed that this many responses came in over a weekend. Buster

I'd have to rerun the survey - which is why I'm asking here what questions might be helpful. It also might be better to run the survey under a more secured manner - Too much correlation sort of crosses the line of privacy so I stuck with the weakest data (i.e. zip) at the moment. Buster, Do the answers you get from this survey allow you to run correlations between the different questions? For example, it might be useful to know the success rate of IVIG (from original question #3 – IVIG put into remission) and overlay with Lyme. Or, for example, IVIG success rate and age of onset (and age of IVIG vs. onset). There may be hundreds of combinations of these questions and it may take a statistician to analyze (are there any smart statistician mothers out there?). Just knowing the % that of confirmation via IVIG, ABX, etc. may not be as useful as knowing the % with, say for example, early treatment. So my original question, stated differently, is: are you able to match the answers of all the questions to each respondent so that different correlations can be made or do you only know the % of each answer to the individual questions? FYI, I have been trained in statistical methods of problem solving (specifically six sigma, Taguchi methods of design of experiments) which are very useful in finding correlation and confounding causes with small size populations (experiments). To get the most out of this type of a study, it would be ideal to make the question/answers as specific as possible and limit the answers to 3 (not including don't know).

My sudden onset is correct (yes) but my fever is wrong (he did have a fever, the dot says No). We are certain it is Pandas. Hi Laura, I see two in your zip code. You have to zoom in quite a bit to see the two. I think one says yes and the other no on fever. I can see why surveys give everyone unique ids :-) Perhaps in the future, I could ask people for a unique code -- that way they don't have to use their login, but can see the record. Buster

I went into the data and it looks like there were two responses in the same zip code -- so DebC looks like another nearby.

Okay, I'll drop #2. This came from Dr. K's web site which made me groan a bit. Buster

Here are the other questions I've heard from parents : 1) Overlay with Lyme incidence reports 2) Education level of mom [hey, what about Dads :-) ] -- came from Dr. K's web site 3) Likely correlation with incidence of acute rheumatic fever -- can we get that from CDC? 4) Check for confirmation of GABHS infection at time of onset/exacerbation? 5) Check for confirmation of mycoplasma pneumonia at time of onset / exacerbation? 6) Record age of onset 7) Record current age 8) Record age when parents heard about PANDAS 9) How did parents hear about PANDAS 10) Overlay with GABHS emm-type frequency Are there other things -- I might not run the survey, but perhaps we can get one of the researchers to. At the moment, the graph does seem correlated with population density -- lots of reasons why that might be true.

Hi Meg, it takes me a manual excel spreadsheet to transfer the responses from SurveyMonkey and then get them plotted on a map. I don't have a way to automate this step yet. So if your dot isn't showing it probably means I haven't gotten the batch done yet. You can look at first post to see the time that I updated the map. I'm using the geographic centers of the zip codes. Buster

Hi, I added the other items from the survey to the map. At present, I made the survey open and only plotted zip codes. I then shifted by a block any result that had the same zip code. I'm trying to find the right balance between anonymity and giving a useful picture. Lots of things missing so far (age, zipcode now versus when symtpoms, siblings with similar conditions, multiple entries, ...). After we get a viable initial cut, I'll ask for help on what the survey should have had in it looks like I can group/change flags to those with PANDAS vs PITAND vs UNKNOWN. See what you think, Buster http://www.batchgeo.com/map/ca5449d55ccb94010dd9dbfbc0fdd870

Good question. I've adjusted the map so that same zip codes are bumped by a tiny amount (like a block). I'm trying to respect people's privacy at the same time to get a general idea of where stuff is happening. Hopefully I've struck the right balance. Please see if you can see groupings now.... Buster

Because one person skipped the question -- so there were actually 99 reports on #1.

Hi Folks, Here are the statistics at this point with 100 reports: You can reach a dynamic map at: http://www.batchgeo.com/map/ca5449d55ccb94010dd9dbfbc0fdd870 Buster

I've uploaded the new map -- please see if you are there. http://www.batchgeo.com/map/ca5449d55ccb94010dd9dbfbc0fdd870

Sorry, I don't have it automatically updating, I have to cut and paste between two web sites. I'm still seeing if there is another way to do this, but we're up to 87 people.

Currently at 54 reports.

Dr. K certainly would say so. I'd imagine that as long as it is self-reported, that will be true.

In the classic way of social network, can I ask folks to PM others who they know of but aren't on the map? I'd love to get as many cases up here. Not sure what we'll do with the data yet -- and you might have to do this again once we figure out the map. I don't have a way to automate survey monkey to geomaps but will keep the two synchronized as often as possible. There's another tool I might use that enables a shared map -- investigating now. Buster

PITAND is fine. I purposefully avoided asking about Strep. Please mark whether symptoms were dramatic onset or not. I probably also should have asked about OCD vs Tics -- so I may have to start another survey. Please keep suggestions coming here and I'll make another of these as I figure out what I should have asked. I started plotting against population density (i.e., case per 1M people). Terribly annecdotal at the moment but based on zip codes seems currently tied to population density. I'll post more later as more data comes in (I hope). We're at 40 responses. Buster Hi Buster, Do you want PITAND also or only PANDAS? We were diagnosed as pandas but now suspect PITAND. Waiting for tests.