norcalmom

Thank you! So, you never got PEX or IVIG. Interesting. And you haven't done CBT either?

Are Swedo and Cunningham aware of this?

Laure, Thank you for sharing this! I've recently started a new antibiotic with my son, recommended by the LLMD. Previously I've been on the fence about Lyme. Not that I don't think it can cause pandas - I absolutely do - but that my son's test results are mixed, and pretty much the only way he cold have gotten it is from me (I have not symptoms - but I don't rule it out since my sister had Lyme, and I pulled plenty of the same tics she had off me growing up). Anyhow, the new antibiotic - CEDAC seems to be working. It crosses the BBB and has some other properties that the antibiotics he's been on for 2 years don't (azith - which he is still on) We've done 2 rounds of IVIG (7 mos apart). He's much, much better and I've no doubt that he needed the IVIG to get to this point. The LLMD also supported the IVIG. Can you share more about what you pandas story was, and how things progressed from where you were 5 months ago to today? Thank you!

Swedo mentioned that cut off range for being "pediatric" is about 20. So, PANS is pediatric (20), but if you read the pandas criteria - pre-pubescent onset was part of that by definition. Most people are exposed to strep numerous times before the age of 10, and after puberty most people have immunity to it. So, while this may cover 97% of all he pandas cases - I'm sure there are still some that don't meet this criteria. I think initial episodes can be misses. Kid could have had it at age 8 - but initial episode was not recognized as pandas. And next time they may be adult, or almost adult, or be one of those few that do not develop immunity to strep. There are always outliers, exceptions to the rule.

thenama - you just finished writing the appeal and just finished reading the Steve Jobs biography! (so I'm inspired to "change the world" as well as tell other's their work is $*#& ) You have to read the book, or know his reputation to understand exactly what that means! I'll email her an offer. I'm no marketing "expert" but I think I know a decent presentation when I see one, and understand enough about what she wants to say to put together content, and if she would take some help - I'd use all the tech multimedia assistance I could get. I did just see that the title is not her standard title for the Boston gig - it is"How PANDAS and PITANDS Evolved to PANS (It Took More Than Shortening the Acronym!)"..but I bet it the same as the on in TX - THE FIRST SLIDE READS "PANDAS, PITANDS & PANs: Continued Controversy? Or Case Closed?" It is listed on the on-line agenda as PANDAS, PITANDS and PANS: Acute-Onset Subtypes of Childhood-Onset Neuropsychiatric Disorders Here is a link to the presentation she just did in Texas: http://healthcare-professionals.sw.org/resources/docs/division-of-education/cme/brain-post-infection-symposium/0900_PANDASPITANDS_Swedo.pdf

Most of the research is on the people who had Sydenham's Chorea - which by definition is found only in people that had Rheumatic fever. So, any pandas research you find on Syndenham's chorea - and most of the research talks about it in some way - cunninghams, swedos...means that RF is also involved. Also they think - Rheumatic Fever is no longer common in US because of different strains of strep - and the use of anitbiotics immediately if strep is suspected. That is not the case in other areas of the world. RF and SC are still relatively "common". so - Strep is to RF is to SC as -Strep is to PANDAS is to tic- disorder RF creates auto-antibodies that attack the heart and can lead to heart damage, even death. Pandas kids don't have heart involvement as far as they can tell. It attacks the brain primarily. The question is - did the strep bacteria change? They are pretty sure that RF/SC have a genetic component - entire families would get it after getting the same strep as the rest of the community - so a certain strain, plus genetic disposition, leads to RF, so is it the same with PANDAS? Its almost exactly the same, but it different in that there is no heart involvement in pandas. This is how Cunninhgam started to get interested in all this - he major area of research was/is strep and what the auto-antibodies produced by some people that get strep attack the heart. Most of her background is in that. The Heart Association fund a lot of her research. Also, in RF, OCD - isn't t a major presenting symptom (although "emotional issues" is a symptom, and I did read a study of SC patients that cited a relative high percentage had refractory OCD in adulthood - I think the percent was 25%. The relationship is also perplexing because I'm pretty sure that if you had RF or SC you would be on anti-biotics NO QUESTION until you are 20 years old, and if you are older when you got it - a minimum of 5 years. In order to protect your heart . So if RF is to the heart as PAndas is to the Brain...why aren't our kids given long term antibiotics? here's a link to a good summary of treatment for RF:(antibiotics and anti-inflamatories) http://www.mayoclinic.com/health/rheumatic-fever/DS00250/DSECTION=treatments-and-drugs

They will be at PAS in April- it appears to be a HUGE medical conference with all kinds of topics - link at the bottom of this post. I'm assume med professionals only. I really hope Swedo updates her slide presentation it just really #$cks . She needs to consult a PR person to help her revamp her message. I love her with all my heart, but that old preso has got to go before she gets up in front of thousands of people! I don't want it to be all slick and market-y that isn't what I'm talking about. She spends several slides talking about a study and a person that should be dismissed if the name even comes up in Q and A...she has a picture of a panda in a rectangle on the first slide. Its horrible. I'm pretty sure she has been changing the words on the original presentation she did ten? years ago. I'm thinking of contacting her to redo her presentation for her - its that bad! I'm sure she could tap a student that is good with technology - or better - get a marketing grad student and a med student to do it together with her - forcing her to completely break down the old stuff and rethink he past study and everything that has come to bear since as a whole, so that the message is clear and powerful. What was clear to me in Texas is the extent of the chip on her shoulder that exists because of the old "controversy" - STOP telling people its controversial!! That word has no place in her presentation, or verbal delivery. Doctors (and people in general) are scared of this word - you say that about your own research - and they stop listening right there. Why would another doctor diagnose it if the primary researcher calls it controversial? Let the people viewing your information decide who and what the believe. So there was one study - that used an invalid sample group and is therefore invalid- dismissed. You are not there to present that information - you are there to present YOUR information. At MOST there should be one bullet on that particular study's short comings - but ideally, I'd just leave it for Q and A - if the audience is concerned about that one study (and not the 10 studies that support your own research) someone will be sure to ask - and you can answer. Most people -most doctors - don't know anything about it- or they heard the word, and they associate it with a sore throat. And the next thing they learn about it is "its controversial". Then they stop looking into it because they don't want to associate with anything controversial!!! So, they claim ignorance and inablilty to treat it rather than learning about it and risk getting sued using a "experimental" treatment (antibiotics and IVIG) to treat a "controversial" disorder. And while I'm at it - PANS is an even WORSE acronym that pandas - a new parent searching the internet for "pans". "pans and washing", "pans and movements", "pans and obsessions"...how fun will that be. It should be unique so that you can google it, and buy a URL for it (one that you don't have to spend thousands of dollars for because Williams Sonoma owns it). These people are brilliant, but sometimes....they just don't think. But I digress..Swedo is my hero, she really is..here is the link to the Boston gig: http://www.pas-meeting.org/2012Boston/Tracks/details_sessions.asp?det_sesstype=Topic%20Symposium%20&det_sessnumber=4320%20&det_sesstitle=Progressing%20from%20PITANDS%20and%20PANDAS%20to%20PANS%20(Pediatric%20Acute-Onset%20Neuropsychiatric%20Syndrome)%20&det_sessday=Tuesday%20&det_sessdate=5/1/2012%20&det_sessstart=10:30:00%20AM%20&det_sessend=12:30:00%20PM%20&det_sessroom=

People tend to use the term PANDAS generically - I think it is evolved to that. MOST kids who start our as PANDAS quickly become PITANDS (meaning that the FIRST incident occurred because of strep - the second or third exacerbation could be anything - a cough, the flu, even a vaccine) Since the acronym PANDAS was coined prior to discovering that other things like Lyme, and Mycoplasma could also be the cause the very first incident, it is natural that it evolve. They are trying to replace it with the acronym PANS - which describes the symptoms more and the trigger less. It stands for Pediatric Accute-Onset Neuropsychiatric Syndrome. There are many other autoimmune disease - that can trace their initial trigger to a LIST of infections/or other triggers. For example several years ago I had a mild case of "Lichen Planus" its a skin disorder. I was told by the dermatologist that diagnosed me that in 50% of the cases it was linked to one of 3 things (so we had to test for those other things) - the things were - Hep C, Lupus, and get this - amalgam fillings. And it 50 % of the cases no cause could be identified. Since I had all of my fillings replaced (I had TONS- they were old and starting to break off) about 2months prior to the rash occurring, I'm pretty sure it was the amalgam. (I'm fine, it was mild, and lucky for me I had a case that was self limiting - it went totally disappered after about 3 years). Swedo is presenting on it at a meeting in Boston in 2012 - and the description of the session reads: "Although there is continued disagreement about the nature and etiology of PITANDS and PANDAS, (Pediatric Infection Triggered Neuropsychiatric Disorders; Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, respectively), there is growing recognition that a subgroup of children with obsessive-compulsive disorder (OCD) are distinguished not only by the acuity of their symptom onset, but also by the presence of numerous comorbid symptoms, including emotional lability, anxiety, and motoric hyperactivity, among others. Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is the new name proposed for the subgroup, focusing attention on symptom onset rather than the postulated etiologies of PANDAS and PITANDS. The diagnostic criteria proposed for PANS have a similar clinical focus and facilitate recognition, diagnosis and treatment of the disorder. In addition to these improvements in clinical care, the revisions promise to provide new opportunities for basic, translational and clinical studies of childhood-onset OCD and related disorders." Here is a link to the PAS meeting in Boston that that talk takes place at (medical professionals only - so tell your docts about it!) http://www.pas-meeting.org/2012Boston/Tracks/details_sessions.asp?det_sesstype=Topic%20Symposium%20&det_sessnumber=4320%20&det_sesstitle=Progressing%20from%20PITANDS%20and%20PANDAS%20to%20PANS%20(Pediatric%20Acute-Onset%20Neuropsychiatric%20Syndrome)%20&det_sessday=Tuesday%20&det_sessdate=5/1/2012%20&det_sessstart=10:30:00%20AM%20&det_sessend=12:30:00%20PM%20&det_sessroom= Here is the DRAFT of criteria to be considered PANS- doesn't even mention Strep or the infectious trigger - I. Abrupt, dramatic onset or recurrence of obsessive-compulsive disorder (Eating disorders may be an alternate manifestation of OCD and are counted here) II. Concurrent presence of additional neuropsychiatric symptoms, with similarly acute onset, from at least two of the following seven categories (see text for full description): 1. Anxiety 2. Sensory or motor abnormalities 3. Behavioral (developmental) regression 4. Deterioration in school performance 5. Emotional lability and/or depression 6. Urinary symptoms 7. Sleep disturbances III. Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder or others. Note: The diagnostic work-up for PANS must be comprehensive enough to rule out these and other relevant disorders. The nature of the co-occurring symptoms will dictate the necessary assessments, which may include MRI scan, lumbar puncture, electroencephalogram or other diagnostic tests.

It was probably the presentaion she did - I'll pm you if I can find it

We've not done psych-meds. NAC seems to help a little, and a few days we added CEDAC as an anitbiotic. My son had mycoplasma at some point, and I wanted to move to an antibiotic that crosses the Blood Brain Barrier. Its only been a few days, but it seems it is working (knock on wood). He also had IVIG twice. Everything has helped - but the IVIG was a HUGE help. HIs symtoms are sooo much less than where he was 2 years ago. I think that Bat-S.. also had mycoplasma? Which is why I'm sharing above info. My son's IgG was 2450 (normal range is under 600 or so) no IgM. So, docs were split as to weather he had a chroinc infrection, or just a very strong response when he had a past infection (so LOTs of antibodies to it). After some research on it, and the BBB I really wanted something that could cross the BBB - to get at it (if its in the brain), or if he had Lyme (I'm just getting my head and heart around treating Lyme- its a commitment!)

Lemon, is Alkalizing to a body's Ph. Even though it contains acid. . And since I know you won't believe me (since I didn't when someone told me that years ago) I just quickly googled a link and found the chart on the bottom of this page - and Maple Syrup is also very Alkaline (or alkalizing to your body chemistry) Never would have guessed that one either. I'm going to be a lot more free with with syrup! http://www.naturalhealthschool.com/pH-balance.html

I think you may be mistaken. There is no pandas test. It is a clinical diagnosis. There was a study done by Dr Cunningham which we on board call the "Cunningham's test" which measures ani-neuronal antibodies (2 kinds), dopamine (D1 and D2) as well as Cam Kinase - high amounts of which indicate increased signaling. She wrote a couple papers on these tests years ago - looking at Syndenham chorea patients and pandas pateints and comparing those measurements to "normal", OCD, tourettes and ADHD. It appears that pandas kids, like SC kids, have higher than normal Cam Kinase, and usually anti-neuronals or dopamine. She is trying to commercialize the test, and is in the planning stages of opening a lab to do so, but as far as I know has stopped admitting blood to her study (they had processed over 1000 samples so it was offically beyond what was needed for the "study"). I hope to see something from that published soon, and something on her lab. Kids in the NIMH pandas study will have these tests done. But I'm pretty sure that is the only way to get them at the moment. There's also debate on what the numbers mean - she needs to look at other dieases - like LYME (which she is - apparently that also causes high anti-neuronals)..it can be used as part of the clinical diagnosis, but its only part of the picture.

Do yo remember what is was about? I don't recall anything new articles in 2010. She made a presentation at U of Texas last year at the grand rounds, and a link to it was posted here for a few days before the board had to remove it because it was not a public document. Most of it was what she presented at the Texas Symposium a few weeks ago. "Pandas:a way forward" -she's cited a bunch in that (but don't think she is author) could that be what you are thinking of?

I almost gave myself a nervous breakdown trying to make the decision to do IVIG. I was SOOOOOO nervous and went into an uber -protective mode. I cannot imagine what I would have been like if I had a 3 month old too (alll those hormones and lack of sleep). I thought people would like I was nuts going half way across the country to see a doctor becasue none of the local doctors believed in the diagnosis, let alone were willing get IVIG for him (we had on phychiatrist say she would see if an immunologist she knew would do it - but by the time I was ready to do it - I wanted to see the doctor that had done the most of them, not someone that had never treated a pandas kid with high does ivig before. Best thing we ever did. Also, when Dr K looked at me and said - "Its time to run over the reins to me. You don't need to worry about him for the next two days, thats my job now" It was like a huge weight was lifted from me! It was the closest thing to a vacation I'd had since the thing began. After we were done, it really wasn't that big of a deal, and I wish I had done it earlier. I think most people are petrified,but its actaully very common procedure for other illnesses.

Are you kidding? Most people on this forum would give their right arm to have their kids seen by one of those doctors. Even TALK to one of them. You're going to have testing and care that most of us couldn't even imagine. They have a VESTED interest see that everyone of these kids gets better - and are going to spend the time and effort to do whatever they can to make that happen. Their entire careers depend upon it! The only thing I would probably try to do it get your child on-going ABX after they are done. Good luck. Its a lot to juggle, but at least you will have no regrets.

Yes - Adreneline, or epinepherine can increase permeability of the BBB. Many pandas kids had their initial episode at the time of a stressful event. here is one article that says they use it with mice to get the BBB open in order to deliver another drug, that normally could not pass through the BBB. "Here, we tested pharmacological manipulation with epinephrine to restore functional transport of P-GUS across the adult BBB. Epinephrine (40 nmol) coinjected i.v. with (131)I-P-GUS induced the transport across the BBB in 8-week-old mice." http://www.ncbi.nlm.nih.gov/pubmed/17646643 You can google more on it...it seems like it is a given. Most work in the area is on opening (not closing) the BBB safely to deliver drugs for brain disorders.

no one argues that the anti neuronals are in all people - they are just in very, very high amounts in our kids. YES - a stressful event can open the BBB. Epinepherine (sp?) can be used on mice to open it, and the mouse study scientists mentioned that, but I beleive they used another product on the mice. Epinepherine is naturally occurring in our bodies as reaction to extremely stressful event. I would assume once the it occurs- it leads to more "stress" - since our kids enter into a "flight or fight" state in delaing with all the weird things their brains are doing, so it is a cycle that leads to more opening, and further creation of the antibodies. There was a researcher that studies the BBB attending the symposium in Texas. He was sitting one table over from me at the dinner. Anyone reading this remember is his name? I know there was at least on pandas parent - a dad sitting at that table. I think this is an whole 'nother area of study. The odd thing is - our kids don't show markers of inflamation. So I wonder if there is something other than inflamation that can increase permeability? Stress hormones...I dunno. But I'd like to ask that guy what can open it and what is know (if anything) to help close it. IVIG - I've read its also highly anti-inflamatory. I know steroid work for many kids, but we've always decided the risk of new infection outweighted the benefits, and was feaful that if there was an existing infection of anykind (like Lyme, or mycoplasma) that would be the very opposite of what you want to do, and that the steroids usually only give you a breif respite anyway. My son it in a different place from extreme exacerbation - he's doing fairly well, and is fairly stable, but not 100%. I very much doubt that supplements would help him in the state he was two years ago. He needed 2 IVIG's to get to where he is. Now I'm jsut working on whatever I can do to speed the healing, closing BBB, getting CBT (and perhaps pych meds if the supplements don't do enough to get him to a place where he can do CBT without the extreme stress he has when faced with doing CBT - if stress can open the BBB I don't want that. When we redid his cunningham test several weeks after his first IVIG he was still "boarderline" pandas - 133 cam K. Antineuronals were down, but D2 was boarderline (very top number for "normal". This was down from 176 prior to IVIG - even when not in exacerbation - but his baseline at that time had many symptoms still. As for stuff that crosses - some stuff crosses, some doesn't. Antibodies and bacteria are suppossed to be too large to cross. Virus's can cross. Mycoplasma can cross. Some drugs cross. Its a cunnundrum because - if your child has lyme (in the brain) or anything that is an active chronic virus - you want to further open the barrier and send in something to kill if off....I'm not sure (have to read more ) but I think that some things JUST cross - like minicycline - they don't damage or open it, and I have to read more about crucumin too - I think it has something that crosses, without increasing permeabilty - as a matter of fact helps stop the permeability (I think? - or it is the opposite as one post above says?)

I've been thinking about the Blood brain barrier lately. Since apparently our kid's BBBs are compromised for some reason. I'm wondering if it isn't a disorder of the immune system, but rather of the BBB - since the immune system will normally make anti-neuornal antibodies during strep in normal people (as evidenced by the fact that Cm K went up to 135 median in these people) , and the fact that even in the the mice study that showed that you can "get" OCD by exposure to the antibodies - they had to use drugs to open up the mice's BBBs. If the immune system learns that when it finds an antigen it should produce more of the anitbody for it - stands to reason that in Normal people it produces the antineuronal antibodies, but stops at some point because the antibodies can't cross the BBB. Our kids can - so these antibodies find the anitgen they are looking for and tell the body to make more, and more. Anyhow, I'm looking for supplements that are antiinflamatory to replace advil for us. I'm also looking thinking about switching antibiotics to one that crosses the BBB, incase DS has lyme or mycoplasma(myco P can cross the BBB) and read that curcumin is not only antiinflamatory, it cross the BBB and has some other properties as well. Below is a page I found. Its a very, very, small world - I was just googling away and this site is written by a couple I know. They used to live in my area, and they worked at the same company as my husband and I met at. If you go from this page to the home page she has a "products we like" list that links to numerous products that are very informative. They are a really amazing couple, and even got the FDA to approve a radical treatment for their twins to help them with the rare disease they have. The website is heart wrenching, but inspiring (and the product list is great). http://addiandcassi.com/the-real-curcumin-for-treating-alzheimer’s-parkinson’s-and-other-brain-disease/

I can't believe the original study had 50 kids - 20 years ago, before the internet, and before there was even a name for the disorder!

PS - I've also read what peglem wrote as well - that the follop up testing is usually done at the wrong time. 2-3 weeks may illicit a response, but many kids with problems will go back to where they were before if measured at 2(?) month. I can't remember exactly - you could google it.

No - my DS only had one or these titers, and our original immunologist - who was more of an allergist - wanted to do this too. Its standard procedure - for NORMAL people. Our next immunologist tried to additional informaion using some type of B-cell test (?) anyhow, there was a problems witht he testing lab and they messed up his sample so it never got done, and I opted not to re-stick DS (severe needle phobia). So, no. I would not re-vax. I've read accounts of kids that have reacted to vaccines, - enough to skip this for me.

Orion- I bet Nicholson's presentaion is the same that is posted on his website. Just go to his site - http://www.immed.org/ and look at "recent videos" and "NT Factor". You might be able to search NT factor on you tube or "lipid replacement".

There's also a theory that certain strains of strep set it off - more so than others - just like the strep that used to result in Rheumatic Fever and lead to Rheumatic hearts and SC (that strain is no longer common in the US, but is in other countries)...its a theory. Also, if you live in a lyme endemic area or have any other environmental factor that could make you more at risk - the neigbors probably have that same exposure risk. I would contact the trail to see if they would let her in. They want kids in first or second exacerbation, I don't know if severity is a factor. I know they are focusing more on OCD than tics. She is very fortunate to have you as a friend and neighbor!

The "about 10 good pandas Doctors" was a comment she made, not a slide, not a subject for the presentation. I don't recall the context exactly anymore - it was probably during Q and A, or perhaps she was explaining to the room what parents and kids go through to get treatment and diagnosis. I'm kinda OK with 10 - if they are somewhat geographically dispursed, And I think its growing. Two years agao I felw from CA to Chicago for treatment, not there are 2 docs within 3 hours (and actually three if you count our psychiatrist that made our diagnosis - who now is working with an immunologist across the street form her). I prefer this "specialist" model- regular pediatricians would know enough to refer you to a pandas specialist, and then the specialist does the all the testing and treatment. There is too much to know for the pediatrician to do much more than refer your child on. And most of us know this because our children have been sent on, and on, and on, before finding a pandas - knowledgeable doctor. The problem is the NIMH needs to give the pandas specialist designation to a group of doctors, so that our pediatricians know where to turn when they suspect a case of pandas.

Dr. Louise S. Kiessling, MD - that is the name I couldn't think of earlier. I just read a Q and A in some local on-line paper for some town in RI with her - and I'm not too sure if she treats with antibiotics or IVIG, but she's been around pandas along time. I think her original paper was 1989. You could post to see if anybody on the baord has experience with her. Neurodevelopmental Center 555 Prospect Street Pawtucket, RI 02860 Phone: (401) 729-6200