norcalmom

How often have we heard that we need more research? We have a handful of clinicians mostly - and a few "true" researchers - working on pans and pandas. I think most compelling research has come from or is in the works from: Cunninghams, Swedo, Hornig, and Agalliu. I've spent number of hours over the past few days on the Broad Institute Website, as well as the The McGovern Institute site. PANS and Pandas not mentioned anywhere. There are millions in research dollars here and hundreds (thousands) of researchers looking at aspects of biological functions that are implicated in the PANS hypothesis. Genetics, Immunology, Neurology, and Psychiatry. http://www.broadinstitute.org http://www.broadinstitute.org/psych http://mcgovern.mit.edu/about-the-institute Broad is focused largely, but not entirely, on genetics. The Stanley Institute and McGovern Institute are focused more on the Brain and Psychiatric conditions. But of course, there's overlap between all of them. The Director at Stanley Center for Psychiatric Research (part of Broad) is Steven Hyman, who was previously Director of NIMH (must know of heard of Swedo...) It seems to me the fastest way to get some research done and leverage existing resources, would be to take some conventions, tests, (etc) that have already been developed and either test some pandas specimens or apply a pandas convention. Much the way that Drittan Aggaliu did. He developed a technique to evaluate the BBB in mice for stroke victims. That's is basically his life's work. Somehow he became interested in pandas. He induced repeated strep infection to see what might happen to the tight junction of the BBB in mice - to see if the same thing that happens after a stroke (tight junctions fail)- might happen with repeated strep infection. He did this because for him - and all the researchers - a big part of the PANDAS hypothesis "broke down" when it cam the BBB. The antibodies are too large to cross it. He had already spent years of his life developing the technique to look at the BBB in live mice. Pandas gave him something else to look at beside stroke. A relatively small investment in time leveraging many years of research. Still waiting for results and a paper on it, but looks like very promising research, from an unlikely source. How do we garner more interest like this? Theres money and grants that exist for this research. We need some researchers to become interested, or their directors to direct some investigation of pans/pandas using their techniques. Maybe a start would be having some pans/pandas researchers attend or present at some meetings. Sept 9, 203 they are hosting one called Symposium on the Emerging Genetics and Neurobiology of Severe Mental Illness. There are a large number of videos and summaries from last year here:http://www.broadinstitute.org/scientific-community/science/programs/psychiatric-disease/symposium/2011/symposium-emerging-genetics Anyone have any experience in the medical research field - have any "in's" - with either the Broad Institute or another similar research program? Suggestions??? I don't know if the Sept 9th is open to non-med, but Im thinking of going if it is.

I think the blood needs to come from known, verified pandas kids - from Swedo preferably. Of course, they may have already started to look at it, most of the researchers play their cards very close.

If your mycoP IgG is postitive but the IgM is negative, then you need to retest to see if your IgG is going up or down. Many, MOST - even pandas doctors - thing that negative IgM means you are negative, and the IgG means you had the disease in the past. That is not true. IgM will stop being made by most people if the infection becomes chronic, or if they contract the infection several time during their lifetime. Just ask for Myco testing again in a month to see if the IgG is trending up, down or very little change (small fluctiation is OK - means its probably gone). You can also get Cunningham panel done if you have ruled out most common infections. Moleculera labs runs those tests. It tests for the actual autoimmune reaction we think is happening in pandas kids, not for infections that trigger the autoimmune reacation. You can have pandas without any infections. Its an autoimmune reaction to an infection - which persists after the infection is cleared.

time of day should not matter. Didn't the doc that did the testing recommend a dosage? Its supposed to go up something like 10 per month if you are under 20, and taking 5000/day. I'm not suggesting that dose for you, ask the doc that did the testing and do your own research. D3 is a steroid. K2 helps absorption, and helps to prevent d3 toxicity (although very difficult to become toxic). my DS's was at 16. very low like your child. I had been giving him occasional drops of D3 in his cereal - these were much lower does maybe 1000, and I'd give it to him 1-3 times per week apparently did nothing (since he was at 16). Doc just had his level retested - 2 months into the 5000 units per day dosing. she wants it above 60/70, and once it is there, will back dose down. I don't know results yet. After 3 weeks - he stopped picking his gums. His gums were inflamed on and off for past year. Almost looked like trench mouth. I couldn't tell if it was pandas behavior, picking, or if picking because they were bother him in the first place. Periodontist (several of them) had never seen anything like it. They did not think his picking could have caused the inflammation that was very uniform along the gum line (but they've never seen a pandas kid in action, and I knew he was picking at them more when he was stressed, so I thought very likely and OCD thing.) Pretty sure I was wrong. Or maybe we were both sort of right. Any how -appears that the D3 is the reason his gums don't bother him any more. Did some research and there is link between d3 and gum inflammation. DS takes Pure Encapsulations brand, and occasionally I give him a K2 (because my K2 has a significant amount of D3 in it as well, don't want to give him too much - couldn't find a K2 without any D3 in it on the day I went shopping for it - I'm sure there out there tho.) Good luck!

I have over the years seen a very small number of taking both statins and beta blockers for psych problems. I found a number of articles on both when I googled them. (ggole beta blockers and bipolar if interested. I think I've seen posts on the board here on it too. Not that I'm suggesting that for anyone. Thanks LLM for the link to actual study, and for the info on the 3 and me. I've been on the fence about the 23 and me testing. I'll probably get it done, but I'm weighing it against the more complete genetic testing, not that I don't think its valuable - but I might want more than that small window. It blows my mind how everything is connected. I'd like to know if those calcium channel genes are related to autoimmune disease as well - its probably not new enough to make a press release on since I think it is accepted that autoimmune disease has a common genetic component. Possibilities of cause and effect seem endless. A saw George Chandy present, what appeared to be a miracle drug, last September in Irvine. His initial human studies for it were for treating MS, but he said that, it has potential to treat many different autoimmune diseases, they just picked MS as a start. Its a "partial" Potassium Channel Blocker - but I recall him talking about the calcium channel in his preso too - again - all related. They have completed the first round of human testing and are moving on to next phase. It appears that they moved quickly through testing and reported that they were happy with results. It isn't a "correct the cause" treatment, but would be much better than conventional treatments currently available for MS and RA (and others apparently). The pandas folks in the room asked if he would test some pandas sera- he has a method/test to identify if the functions of the channel ions are out of whack (which he had identified in several autoimmune diseases) and would thereby potentially benefit from his drug. He said he would, but who knows what the outcome of it was (or if it was ever done...). From what I recall, his tests showed cells function in MS and RA (and maybe Lupus - can't remember but there were 3 or so diseases) and the cell function was 100's of time whatever the normal measurement was supposed to be. If pandas cells behave similarly, it would go a long way in proving that we are dealing with an autoimmune disease. http://www.kinetabio.com/autoimmune.html

This is a little scary. Since I found this looking while doing research on calcium channels, which I was doing so I could learn more about Cm Kinase II - one of the Cunningham tests. I wonder if the genes are also related to other neuronal -autoimmune disorders - which there is alot of research linking calcium channels to as well. http://theconversation.com/large-genetic-study-paves-way-for-new-treatment-of-mental-illness-12546

I hear you. my son is the fairest in the west. We went of Doxy last summer, and started it back up in late Sept. There is an herbal called A-myco (I think it is a Byron-White formula) that is a tincture that DS also took. Also, I have found DS low in Vit D3 (his level was 16) and we not have him on 5000 per day until his levels get up - and I think it helps a lot, with a number of ht ints inlcuding boosting immune system. And, DS just started Plasmic Transfer Factor, another thing to help regulate immune system.

rifampin didn't do anything for us. Also - I believe Ive read you should not take rifampin alone, its usually paired with another antibiotic - it increased the permeability of the other antibiotic thru the BBB is how I understand it, Is there a reason you have not tried Doxycycline? Mino is not Doxy, it is in the same class, but not as effective for MycoP (my understanding). I THINK we tried the rifampin because our LLMD was used to seeing Bartonella whenever there was significant neuro phych symptoms, and riphamin paired with (insert antibiotic here for bart...I think we tried both mino and azith) is usually the treatment. But for us, we had more success with the Doxy (we used Doryx form of Doxy). DS is now off all antibiotics, still has one or two troubling symptoms. Waiting for last MycoP test - which we took after he went off all antibiotics for several months - to see if the titer is going back up or not.

They change. From my research, and contrary to popular belief, the initial onset is not "overnight" Most parents miss the initial onset, and even the first episode. Not until the third or so do all the symptoms align and show up almost overnight. As the disease progresses, the "exacerbation" comes closer and closer to the time of infection, to the point where in some kids (those with vigilant parents, or, those with easy to recognize symptoms) you can tell by your child's behavior that they will, with in a day or two, contract an illness. Theory is that as the immune system matures it gets better at sending out the antibodies that protect it - faster. Its how you develop immunity to illnesses. In our kids case, its sends out the auto-antibodies along with the regular antibodies, which is what causes the odd behaviors tic, etc. In my son't case I could see when he was about to head into an exacerbation and a cold or other illness when he wet his bed. For some reason, it was usually his first symptom, followed by a host of other within a 24-48 hour period. Could be that the the others are harder to observe, and there's no arguing with a wet bed. He's also have tic very close to the illness as well. Most times his exacerbations followed a course of worsening for approx. 1-2 weeks, peak symptoms for about 2 weeks, and then about 2 more weeks where he got a little better. Its hard to see this pattern at first, because they get sick in waves and better in waves. After about a 6 week period he was back to baseline - or a new baseline, that may include a new or slightly different symptom that the last time. There were a couple exceptions to his - when he had loose teeth - much short - maybe only 5-10 days, that seemed to go awasy within a couple days of the tooth falling out, and he had a stomach bug - a 24 hour thing - and he only exacerbated for about 2-3 days with that. Its not always (or even usually) strep that will cause an exacerbation. Many, if not most, kids will exacerbate with other illnesses. Strep is theorized to be a primary trigger (along with a couple others) to the condition. But, not necessary for subsequent exacerbations. If this is only your child's second exacerbation, and you know the first time was caused by strep - you may want to consider being part of Swedo's study. They only need one or two more kids, so don't delay if you are considering it. They really only want kids that had strep,and it is either their first or second exacerbation. I wish we had caught it that early and gotten IVIG sooner rather than later! In addition they do a host of testing and screening. Maybe worth a phone call to find out if you might be interested and are eligible. http://clinicaltrials.gov/show/nct01281969 Best of luck in nipping it in the bud.

Here is another article, from January of this year Its for all you parents of Ticcer's out there who's hearts sank when Swedo decided to move away from the ticcing kids due to all the backlash from the Tourettes docs. Written by Hornig and Lipkin (Direct of center of Disease Control) - you don't get much better cred. than that! http://www.sciencedirect.com/science/article/pii/S0149763413000080

Myco - You need to retest. i have NO idea how doctors started to think that a high IgG is fine untested. If you research the literature on the tests themselves, you will find that an out of range IgG means you need to retest. IgM will often stop producing in people that have had either Repeat myco, or chronic myco. So the only way to know if the myco is gone, is to track that titer to see if it is going up, down, or is unchanged. It should slowly go down after the infection clears. Thats why there is a High - in the IgG range. Because it isn't NORMAL for it to be really high, thats why they test it in the first place. IgM high - no brainer. IgM negative and IgG high after treatment - retest. I'd be esspecially concerned if its really high. But, the fact that your child HAD an IgM the first testing, tends to indicate that he makes myco IgM (at the moment)...until he doesn't make it anymore (and you never can tell when that may be). My child does not make IgM. His IgG continued to go up and up - which I had to research because at least 3 docs said it meant nothing. My ds had no myco symptoms - no cough - nothing - just the rising titer. He probably had it for over a year, chronic myco. He was on Doxy/doryx and some other stuff for it for 9months (longer, but had some breaks like entire summer last year...) and he's been off all antibiotics for several months now. His IgG went from 2980 down to 2400 over that 9 month time. And I just retested it - to see if it has started to go back up, or is continueing to go down now that we've stopped the antibiotics. PS - he was on long term azithromycin for 2 years before finding out he had the Myco. It sounds like your child had a more "typical" case, not a chronic one since he had the cough and the positive IgM and got treated right away. Better safe than sorry - this thing is really hard to get rid of once it is "chronic" (systemic) - out of the lungs and into all the other cells in your body.

here is link to a page with brief overview of names and strengths of the generic Doryx. The regular Doryx out of pocket for us was over $100 for 30 days, and would have been well over $1000 without insurance - just to give you an idea. http://acne.emedtv.com/doryx/generic-doryx.html Here is a another link to cost and coupons for Doryx (or the generic) at a number of nationwide pharmacies: http://www.goodrx.com/doryx

I believe there is now a generic Doryx - released about 3 months(?) ago when the Doryx patent protection expired. It is much easier on the stomache than regular Doxy, but the sun sensitivity is the same. Years ago I had sun sensitivity when I was on minocycline. What I experienced was not just a few more freckles than usuall, or even burning easier - its like you are allergic to the sun. Your skin tingles - with even a tiny bit of exposure. I did not find sunscreen helpful - I wore long sleeves and pulled them over my hands if in direct sunlight. I am not fair or dark, but I'm Irish with some spanish blood in there. I tan. But on the mino - I would turn bright red in MINUTES - 5-10 minutes. And it felt "tingly"- within seconds of being in the sun. I don't know the percentage of people that have this reaction - but I do believe it is a fairly common side effect, not a rare one.

I think there are a number of just -beginning- to- be -recognized autoimmune disorders with psych symptoms. Vast majority of people are misdiagnosed and given psych meds, or locked up in pych ward. In the case of NMDA, result of misdiagnosis can lead to death. NMDA looks an awful lot like pandas too. Many similar disorders like NMDA and GAD (whatever that is) would fall with in the PANS defintition - only NMDA is not pediatric specific. Happens to kids, but also adults. There needs to be a better, bigger umbrella. Im sure a number of pandas kids are being misdx'd as well - no one ran GAD or NMDA tests on my DS, and he certainly looked like he could have had those - especially in the beginning. I'd ask your doctor. Get your research and suspicions lined up and ask - I would think if its a pans or pandas doc they would run the test. I've asked for a number of tests over the years, I can't think of any requests that were denied. If they won't do it - try to find an immunologist or specialist in your area that may be familiar with the disorder and get an appointment there.

Insurance should be paying for a lot of that $925. although, I do agree it seems high. All lab work cost money (we usually only see and feel (ouch!) a portion of it), and it will be interesting to see which insurers pay what portion of the cunningham panel. Its a drop in the bucket if you are thinking of doing IVIG - and mainly it predicts if your child has an immune modulated condition, and will benefit from IVIG. Dr K gives steriod bursts a lot - to see if child will respond to immune modulating therapies - its basically his version of a "cunningham" test.

What's the difference between PANDAS and all the other recognized autoimmune diseases? They have a test. MS has a test, NMDA encephplay has a test, RF has a test. None of the tests are 100% - all diagnosis also rely heavily on clinical evidence, as well as other supporting tests. And even witht he tests, it takes along time to get diagnosed. But for Pandas its near impossible - because we don't have a "test". But we do. And Swedo uses it. Why the heck don't pandas "experts" add the cunningham test to their arsenal when talking about diagnosing PANDAS? they all cite her work, and use it? Why does the NIMH site and even yesterday's Tweet Chat - overlook this test? I'm bummed I missed the tweet -chat yesterday with Swedo, but I'm trying to get a couple questions ready for the Monday night Radio Pandas. I just read Brain on Fire, and it has me thinking about the similarities and the differences between NMDR encephalitis and PANDAS. NMDA enceph. has a blood and and a CSF test that look very, very similar to the Cunningham tests. Yet even yesterday in looking at some of the tweet-chat tweets, the TOP name in pandas (Swedo) says there is no test for pandas. Not even a shout out to say there is a new test that can support the likely hood of your child responding to immune modulated treatments. And I know she believes in the tests, and I'm pretty sure the subjects in her current all get this test. I came across a pretty cool page, and I've been to subsets of this site before when searching stuff, but never this high level view, so many of you may already know about it - http://www.ncbi.nlm.nih.gov/sites/ga?disorder=PANDAS It appears pandas is on the radar for Dr. Najjar, one of the doctors that treated the author of Brain on Fire. Here is an article I just printed to read. I did a quick scan and see pandas mentioned. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3626880/ Also, take a look at the one page doc for the test for NMDA enceph test. Succinct and to the point. http://www.aruplab.com/Testing-Information/resources/TechnicalBulletins/November2010/Anti-NMDA%20Receptor%20(NR1)%20IgG%20Antibodies.pdf I wonder if high anti-NMDA antibodies will raise Cam K Ii levels? OR other disorders that are know to someone get through the BBB like MS. I think Cunningham scheduled to be on the Radio Pandas along with Brain on Fire Author Susannah Cahalan, but i'm not certain since this was a reschedule for a couple weeks ago. I hope so, because I've got a couple questions for her.... one last page I found when poking around. Here is a paper on tests for autoimmunity - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2832720/

Saw the sample page - thanks!

My son had horrible nightmares - from pandas, not meds. Insomnia, night waking, and separation anxiety at bed time (no wonder ). We put a thick memory foam mat on our floor for a while, so it he woke at night he could just come sleep in our room. We did that so that he would maintain some healthier patterns (for me anyway!) of falling asleep in his own bed, and only if he woke up in the middle of the night, or had bad insomnia, would he come sleep in our room (but not in our bed) (because then both me an DH would be loosing sleep too). He was 10-12 when that was at its worst. Most of his sleep issues are finally resolved. Occassional insomnia, but nothing like it was a couple years ago. The mattress in our room was used on and off for about 2 years.

Here is what the site says about the test results: The values from these five assays performed in duplicate and triplicate, are reported in the Patient Profile Report compared with a normal control range. Assay test values above the normal range are reported. An integrated summary of the results is reported as a relative “risk” of PANDAS/PANS scale based on the group of test values compared to normal ranges and means. The relative risk scale includes the designation of: PANDAS/PANS NOT LIKELY PANDAS/PANS LIKELY PANDAS/PANS HIGHLY LIKELY PANDAS and PANS diagnoses are based upon defined clinical characteristics. The Cunningham Panel tests for autoantibodies directed against specific neurologic antigens and receptors, and measures the state of the stimulated immune system against HUMAN neuronal cell lines at a single point in time. The results from the Cunningham Panel are provided to the physician as an aid in their diagnosis of PANDAS or PANS. There are treatments that are known to affect the test values of this panel, which include: recent treatment by intravenous immunoglobulin (IVIG), plasmapheresis or plasma exchange, and steroid treatment. http://www.moleculera.com/testing/ Does anyone know what the break points are for the 3 categories? Also - with the result, what else do they say - like does it say that there may be other conditions that are know to raise the numbers? (Lyme)? Active Strep infection ?

Did your child have an steroids after? My DS had periods of seeming almost manic after IVIG. It was weird. I was so so happy he was happier, and smiling and wanting to do stuff, but he was a little TOO happy for it to be normal.

Good Catch LLM - makes sense!

Latimer in Bethesda? (or somewhere near there). I've seen her present. She is an immunologist(wait..maybe she is a neurologist, cant remember now) - and been treating pandas for many, many years. Also - on lyme - I do think there are fairly high rate of false negative, and maybe because they test your antibodies - and if you will have the antibodies, even after the Lyme is gone. I've seen a number of people post on the theory that the sickest people don't show any bands - because their immune system isn't actively fighiting it, it isn't until they are in, or done, with treatment that their testing becomes positive. Its a theory. the Lyme tests all seem to stink, and you can't put too much faith in them IMO.

You should re test and see how the numbers compare. IgG should stay the same, or ideally go down. If it is going up (a small amount not that important - but a few hundred points is) then you probably have an active infection, even if the IGM is negative.

DS uses liposodal curcumin called meriva-SR. http://www.thorne.com/articles/meriva.jsp I like it because the capsules aren't too big. The other curcumin tabs looked huge. I dunno about enhansa, I've not purchased that one. There is lots of research in the cancer arena regarding liposodal cur cumin being better absorbed.

I agree - IVIG might be the ticket. Also, please check him for mycoplasma. For some reason, Dr K has said that many rage-y kids have mycoP. I know mine did /does. and it the IgM is negative, but IgG is high - you need to test him again to see if the IgG is going up or down. IgM will evnetually go down for majority of people - if the infection become chronic, or if they get mycoP more than once. best of luck. IVIG worked wonders for DS, and although we do other things as well, it helped him get through a critical time, and although not 100% better, I feel there is yet to be somehting that worked as well, or as fast.