EAMom

He does not believe that IVIG or PEX would help since "the immune system is covered" What exactly does he mean when he says "the immune system is covered". How is it "covered?" This is how Dr. Latimer explained things at the 2012 IOCDF conference: "Treat like asthma. Treat infection/get rid of source in environment, then treat the autoimmune response." So in other words, PANDAS usually (often) isn't as simple as "getting rid of the infection" (otherwise there would NEVER be an indication for IVIG and/or PEX) Yes, there are some kids (esp. the acute first onset cases) that will "self-correct" once the infection is eliminated. Others need more, steroids (which you don't want to do if there is a chance of Lyme) and is of short term benefit, IVIG, PEX...

@MomwithOCDson "I think they should pursue every possible avenue of diagnosis and treatment for this boy, including PANDAS. I just don't think, given what we know, this level of destructive, premeditated behavior is rightfully laid entirely at PANDAS feet, is all." and here lies the problem. This mom couldn't get a proper workup/treatment before the arrest. Unless he is very lucky, it is highly unlikely he'll get anything close to that now that he has been arrested.

I should add we've never tried Risperdal, but it scares me!

Yes, I agree with Kathy N, this may or may not be simple untreated PANDAS. More likely it's PANDAS treated incorrectly with psych drugs that just added problems. It's so easy for PANDAS kids to get a slew of psyc drugs rx'd, so difficult to get a proper workup and treatment (long term antibiotics, IVIG). Who knows how many undiagnosed/misdiagnosed PANDAS kids are out in the system commiting violent acts (esp. with the unpredictable mix of psych drugs on board). Maybe this IS an atypical (or even typical) presentation of chronic untreated PANDAS in a teen boy. I think it is very possible. Heck, it's also very possible he has other complicating factors (Lyme or other tick borne infections). That said, we don't KNOW it's PANDAS. From what I've heard (which may be wrong) the only "evidence" of PANDAS is a single elevated ASO. We don't know anything more, and we all know a single elevated ASO does not make a PANDAS diagnosis. Really, what this kid needs is a Cunningham test. If his lawyer was smart, and it was positive, that is something they could use in his defense. BTW, my dd was violent (rages, screaming, never hurt anybody but she was only 7) when PANDAS was full blown (even before Lexapro). Most of her symptoms were self-destructive (anorexia, depression, considered herself a "bad person") but I see no reason why it couldn't at some point have been directed outward if left untreated. @LLM I wondered the same thing. I can't help but think PANDAS network was misunderstood or misquoted. It does not sound like something they would say.

Ughh, Lexapro was our first SSRI. I don't remember the dose. It did help the OCD a bit, but when we upped the dose we had issues (note: PANDAS wasn't "under control" yet, we were on amoxicillin which didn't do squat and had not yet discovered Azith). Actually, even on a lower dose we had issues (school refusal, needing to be upside down a lot, akathesia), but it turned into more rages (and other behaviors which were easily confused with PANDAS symptoms) when we upped the dose thinking a little more would take care of the OCD. Also, Lexapro was pretty horrible to get off of. Google "lexapro withdrawal" and "SSRI dicontinuation syndrome". As far a Risperdal, that drug scares the heck out of me with its gain, diabetes, irreversiable tardive dyskinesia...

I should add that even if you are "lucky" enough to have a child with elevated strep titers (or a positive throat culture etc) there is the "Kurlan/Singer" naysayer camp that will snidely say "strep infections are as common in childhood as eating pizza, maybe it is pizza that is the cause of your kids OCD." This test circumvents that whole naysayer argument...not that looking for identifying a trigger isn't important for our kids. Unfortunately finding evidence of a infectious trigger plus mom's saying "I think my kid has PANDAS, he has all the symptoms" still isn't enough proof of an autoimmune cause of OCD/tics/mental illness for these doctors. The Cunningham Test is that proof.

4Nikki and Kthomas Dr. T (NJ) did mention on one of the radiopandas shows that the test may help PANDAS kids get insurance coverance for IVIG. It was also mentioned the test may be useful to monitor treatment/recovery. We ran the test (more than 1x) a few years ago (when this thread was started!) as part of the research study. We found the test very useful for a number of reasons. 1) It was the ONLY blood test that showed anything abnormal for us (my dd had always had low strep titers, even with positive cultures, and OCD severe enough to require hospitalization.) 2) The first time we ran it, we didn't consider our dd to be in an exacerbation. She was back in school full-time, pretty functional, but we were watching her "baseline"...she wasn't symptom free, but no where near nightmare we had experienced 1 year before. She was had been on antibiotics for a year and we were hoping to proceed to IVIG to further her healing and avoid some baseline change. She came back in the "high PANDAS range" 160's while NOT in an exacerbation. This was enough to convince our somewhat skeptical local Stanford U. immunologist to authorize IVIG for us. Without the test, we would have had to fly to Chicago (from CA) for IVIG with Dr. K. Thanks to the test, we were able to have IVIG 1/2 hour form our house and in-network (so at the time, we easily got insurance coverage). I should note that our immunologist already knew of Dr. Cunningham and respected her work greatly. So, we didn't have to spend a lot of time "explaining" what her research was about to him. 3) Just before IVIG was scheduled, our dd contracted H1N1 and went into an exacerbation. Curious, we repeated the test. She came back in the high SC range, the highest Dr. Cunningham had ever seen (250 something). Well, if nothing else, that really solidfied in our mind that IVIG (which we had debated for 1 year) was the "right choice". Our first IVIG was a big deal for us, we were pretty nervous and it was good to have a very objective confirmation (aside from "parental observation" which honestly only goes so far in the medical world) of her illness and need for treatment beyond antibiotics. 4) To a certain extent we probably "lucked out" that our dd was such a severe case and tested so high when not in an exacerbation (and "off the charts" when in one). In general, I would recommend waiting for an exacerbation, it will come. (Definitely avoid steroids or IVIG before doing the test as it will alter results.) My understanding is that about 1000 kids were in that study we participated in (that's a lot) and a paper will be forthcoming. In addition, there are already 2 published papers on this. This is from PANDASnetwork.org: http://pandasnetwork.org/testing_outcome/diagnostic-tests/ A test to help determine the likelihood of the patients condition being auto-immune in nature, including possible PANDAS, is commercially available by Moleculera Labs. This test is derived from the research done by Dr. M. Cunningham. Dr. Cunninghams research measured cross-reactive antibodies that are elevated in a PANDAS childs brains. Many children got assistance with PANDAS treatment from Immunologists if the results of this blood test indicate PANDAS-like antibody levels. This study was conducted at the University of Oklahoma. In the following studies by Dr. Cunningham, et al., they show that movement disorders in Sydenham Chorea patients a movement problem caused only by strep and PANDAS children are similarly elevated. In both illnesses the basal ganglia are activated by a negative autoimmune reaction to strep. This is important to show doctors so they understand that your child is not simply suffering from a psychological issue and may be having movement or mood issues due to strep antibody cross-reactivity from auto-antibodies (misbehaving antibodies along the basal ganglia nerves) called anti-lysoganglioside and anti-tublin. Kirvan, et al (2003) Mimicry and Auto-antibody mediated neuronal Signaling Cells in Sydenham Chorea. And, Kirvan, et al (2006) Antibody-mediated neuronal cell signaling in behavior and movement disorders. PLEASE: See page 3 figure a. showing elevation in PANDAS children at Acute Stages of Exacerbations. The test is also going to be used on the kids in the current NIMH IVIG trial, which IMHO adds even more credibility to this test. Realistically,the LEAST important scenario to run the test would be if you are already getting top notch treatment from a PANDAS doc, and there is no doubt of the diagnosis, and you do not forsee the test being useful in terms of monitoring recovery or obtaining insurance coverage for IVIG. vs. Probably the MOST important time to run the test would be when PANDAS is still an uncertain diagnosis, and your PANDAS doubting doctors are trying to say your child is "garden variety Tourettes" or "garden variety OCD" (or bipolar, or a kid with a long history of an alphabet soup of diagnoses) and should be treated with psych drugs, not antibiotics/IVIG. I hope that helps!

Good idea Chemar, done.

The "Cunningham Test" (aka "the test for PANDAS") is now commericially available in most states. Here is a link to the company's website: http://www.moleculera.com/ Here is a link to one of the first (and longest!) discussions on this test: http://www.latitudes.org/forums/index.php?showtopic=4834 The test is also discussed under FAQ's: http://www.latitudes.org/forums/index.php?showtopic=6266 , scroll down to "Tests: Antineuronal Antibodies Tests" Post #1 in this thread ("Back from Oklahoma and Visiting Dr. Cunningham") also some good questions and answers http://www.latitudes.org/forums/index.php?showtopic=9361&page=1

Whether anti-neuronal antibodies are diagnostic for PANDAS? [singer 2008] Singer, et al. “Serial immune markers do not correlate with clinical exacerbations in pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.”, Pediatrics. 2008 Jun;121(6):1198-205. NOTE we find out later the kids in this group were not true PANDAS, but garden variety Tourettes. Thank you Neil Sweidy http://www.bostonglobe.com/magazine/2012/10/27/the-pandas-puzzle-can-common-infection-cause-ocd-kids/z87df6Vympu7bvPtapETLJ/story.html "Most of the kids in the study resembled those he regularly sees in his clinic — children with “garden-variety” Tourette’s and OCD. But after working with more physicians treating PANDAS patients, he had come to see firsthand that there was a distinct group of kids who literally had changed overnight, with dramatic onslaughts of OCD and other symptoms. And these “true” PANDAS/PANS cases weren’t represented in his study in any meaningful way."

Whether established OCD and/or tic disorders have exacerbations associated with treated strep infections in kids with Tourettes (not true PANDAS)? [Kurlan 2008] Kurlan R, et al. Streptococcal infection and exacerbations of childhood tics and obsessive-compulsive symptoms: a prospective blinded cohort study. Pediatrics. 2008 Jun;121(6):1188-97. [Leckman 2011] Leckman JF, et al. Streptococcal upper respiratory tract infections and exacerbations of tic and obsessive-compulsive symptoms: a prospective longitudinal study. J Am Acad Child Adolesc Psychiatry. 2011 Feb;50(2):108-118 note: both of the above studies (2008 Kurlan, 2011 Leckman) used the same group of Tourettes kids. This is also the same group of kids as in my next comment (Singer 2008).

Bump and update: The Cunningham Test ("test for PANDAS") is now commercially available in most states. http://www.moleculera.com/

Joybop: "Recent (less than eight weeks) initiation of cognitive-behavior therapy (CBT). Recent (less than eight weeks) initiation or change in dosage of psychotropic medication for OCD or tic disorder (e.g., serotonin reuptake inhibitors for OCD, alpha-2 agonists or antipsychotics for tic disorders)." from NIMH well, if you stopped the CBT you could qualify for the NIMH study in 8 weeks...not sure how long PANDAS would have been going on at that point? Norcalmom: great post!

qannie47- What antibiotics (and dose) have you tried? I would definitely check for immune def., Lyme (any tick history?), and mycoplasma before IVIG. If your child is immune def, insurance may cover IVIG b/c of that. Have you considered the NIMH IVIG study? All expenses paid. http://clinicaltrials.gov/ct2/show/NCT01281969 Also, you should read the FAQ's, lots of good info: http://www.latitudes.org/forums/index.php?showtopic=6266

1) Read the FAQ's by Buster: http://www.latitudes.org/forums/index.php?showtopic=6266 2) Get strep throat cultures on all family members (including suspected PANDAS child). Many PANDAS kids will not have typical sore throat symptoms with strep, only behavior change. Also, you want to make sure there aren't asymptomatic strep carriers in the household. 3) I would recommend the Cunningham Test as a "test for PANDAS". http://www.moleculera.com/ This is discussed in the FAQ's. 4) Where do you live? Maybe somebody can recommend a doc.

More on Lyme Nephritis in dogs http://www.ncbi.nlm.nih.gov/pubmed/23461642

rowingmom, My understanding if that many dogs tolerate Lyme well until something else "tips the boat" in wrong direction and the dog will get sick. This could be another tick coninfection (anaplasmosis is one), or even a bad hot spot (staph infection), or even stress. That said it is my understanding that dogs aren't likely to need months/years of antibiotics to put symptoms in remission, like people do, even though the 1 month of antibiotics won't clear Lyme, it controls things so that a percentage of dogs will clear eventually (years). The big exception the this is something called "Lyme nephritis", which is more common in labs and goldens. Lyme nephritis is almost always fatal. I also wonder how many old dogs out there have arthritis due to Lyme?

Leckman is mentioned in Neil Swidey's article on PANDAS: "For Casoli-Reardon, PANDAS became even less of an abstraction when one of her sons developed it several years ago. She can identify with parents who find themselves completely unhinged by it. As for the critics from neurology, she says, “If you’ve ever had a child with PANDAS, you would never, ever say that it doesn’t exist.” *** THAT DISTINCTION may turn out to explain a lot about the battle. Dr. James Leckman, a professor of child psychiatry at Yale and specialist in Tourette’s syndrome, was the lead author on what is perhaps the most persuasive study challenging the PANDAS hypothesis. That long-term study, published in 2011, found no compelling evidence linking the exacerbation of tic and OCD symptoms to new strep infections. Yet Leckman tells me that in late 2008, well after all the patients had been enrolled in the study, he came to an astonishing realization: He and his coauthors had been studying the wrong children. Most of the kids in the study resembled those he regularly sees in his clinic — children with “garden-variety” Tourette’s and OCD. But after working with more physicians treating PANDAS patients, he had come to see firsthand that there was a distinct group of kids who literally had changed overnight, with dramatic onslaughts of OCD and other symptoms. And these “true” PANDAS/PANS cases weren’t represented in his study in any meaningful way. Leckman says he lobbied his coauthors, who included Harvey Singer, to admit to this failing in their paper. But they refused, insisting they had followed the published PANDAS criteria in selecting their subjects. Leckman had to concede they were right — the children all met the criteria Swedo’s team had established. It’s just that he now believed those criteria were far too broad. So Leckman’s name was listed first on an influential paper that he felt was technically accurate but missed the larger point. Nonetheless, Leckman had already become a changed man. Shortly after his epiphany, he says, “I picked up the phone and called Sue Swedo and told her that I had become a convert.”" http://www.bostonglobe.com/magazine/2012/10/27/the-pandas-puzzle-can-common-infection-cause-ocd-kids/z87df6Vympu7bvPtapETLJ/story.html

Good point Vickie, thanks!

Deedee...show your nephew this Lyme disease map. If dogs are getting Lyme in the South, I'm sure people are too! (note: you might have to selct "lyme" then "dog" on the link.) http://www.capcvet.org/parasite-prevalence-maps/

Ha ha ha ha... A quote from the article: "One such problematic insect is the tick, and its most commonly associated illness, Lyme disease." LOVE the commenter that pointed out that tics are not insects, they are arachinds. "First myth: ticks are insects, as you reported! They're not. They are arachnids, 8-legged, just like spiders." and then: "Right? It's hard to take an article about fact vs. myth seriously with such a basic error!" Seriously, the difference between ticks and archnids is 3rd or 4th grade material....

That is awesome Peglem!

Hi Smartyjones, Actually, her very first set of extractions (these were baby teeth at age 7.5) correlated with her huge severe PANDAS exacerbation which landed her in the hospital with anorexia. She had already started with behavioral changes (rages, some food restriction, hidden ocd) several weeks before (following FEVER) and the extractions made things even more full-blown. AT that point we didn't know about PANDAS, or that she had strep (later both she and her sister would culture positive). We suspect that 1) more strep was released into her bloodstream with the extractions 2) stress didn't help anything 3) didn't know if the nitrous oxide played a role. Fast forward a few years (now needed perm teeth extracted). She did beautifully. She was on antibiotics. We did the same protocol with nitrous and a local. Some people do think Nitrous Oxide is a problem if your kid has the MTHFR mutation...our dd is neg/neg for that however.

bump

We are in SF bay area (expensive). My dd had severe crowding, so she had extractions. The braces were 6.5k. Insurance did cover some of that (ughh...don't remember, how much, maybe 1-2k??). They let us do a payment plan (downpayment, then monthly). I would have liked to avoid pulling teeth but her mouth was too crowded (even if we did do an expander, we would have still had to pull). I even got a 2nd opinion ('cause I wanted to make sure extractions were needed) and the 2nd opnion agreed extractions were needed.