EAMom

Hi, What constitutes "acute onset" or "overnight onset" occasionally gets brought up on these forums. We know not ALL pandas kids have an overnight onset (or the onset is mistaken for the "terrible twos" etc). Per Dr. Latimer (IOCDF conf 2012): "Acute onset kids are easiest ones to diagnose." And parents have wondered what constitutes "acute onset"? Does it truly have to be "overnight"? or can it be something that evolves over weeks/months? Here is an interesting case study(1998, Swedo) on young girl with PANDAS. Her "overnight onset" actually evolved over a course of 2 mo. (started with hypersensitivity to clothing)....evolved to tics a few weeks later, then obsessions/compulsions a few days after that. http://journals.psychiatryonline.org/article.aspx?Volume=155&page=1592&journalID=13 So, it seems that "evolving over 2 mo." would still be considered "acute onset"...

I should add that this mom was asking about Lyme from the get go...insurance paid for 1.5 years of pointless visits trying to prove it WASN'T lyme . Also how much is spent on these folks that are misdiagnosed with MS, ALS, GI issues, arthritis (I have heard of people having surgery for issues that end of being caused by Lyme), etc?

"If ILADS came out with some miracle protocol that worked and cost less than 3 weeks of doxycycline, insurance would be happy to accommodate." My theory is that IF docs (mainstream medicine) were more attuned to Lyme, diagnosing, testing, and treating promptly, lots of money would actually be SAVED by insurance co's in the long run. Just thinking of my friend's dd with Lyme. They got the run around for over a year (until I convinced them to see an out-of network integrative doc who finally did proper Lyme testing). In this past 1.5 years (and still going on) they have seen multiple docs in many specialties, rheumatology, infectious dz, psychiatry, physical therapist, pain clinic, ER visits. Their insurance co. has to pay for all these pointless visits, and would have actually saved a lot of money by testing and admitting she had Lyme/coinfections early on.

This is confusing...I have been watching the FB pages as well. My understanding from FB (mainly Beth's page): 1) he was on abs for 2 years (no info on dose, or if he tried more than 1 type) 2) he reacted badly to psych meds (which led me to believe he wasn't on them) Beth has many good points. But, I wish we knew more about his workup, treatment, medical history. I also wonder about this: "Marianne's most recent idea was to switch insurance companies to a carrier that would cover IV Ig. At that point, she hoped to avoid the antibiotic fight." Is Beth under the impression that antibiotics aren't needed (or normally used) with IVIG?

It doesn't mention the new Lyme culture test http://www.bostonglobe.com/metro/2013/06/01/lyme-disease-rise-and-controversy-over-how-sick-makes-patients/OT4rCTy9qRYh25GsTocBhL/story.html

But they didn't mention the PANS white paper, that is true.

Tpotter, they mentioned both: In the summer of 2010, NIMH convened a meeting of forty-one experts, in an attempt to unify the warring sides. At the suggestion of the chair, Noel Rose, a specialist in autoimmunity at Johns Hopkins, it was agreed in advance that etiology of any kind would be dropped from the criteria. In fact, nothing definitive would be said about the cause of the illness. Instead, the experts would try to describe what the syndrome would look like to a physician confronted with it, and the meeting achieved some consensus that sudden onset set the condition apart. A new definition was proposed that expanded on PANDAS: PANS, for “pediatric acute-onset neuropsychiatric syndrome.” Swedo hoped it would encourage physicians to investigate infectious origins for sudden-onset symptoms. “All you have to do is recognize the acute onset,” she says. “At that point, a definite diagnostic workup should be done.” For his part, Leckman lobbied for greater focus on the behavioural aspects. He also persuaded the group to drop tics as a major manifestation, and to add the strange eating restrictions many clinicians observed. By the end of the two-day session, however, the discussion remained as polarized as ever. Harvey Singer, a professor of pediatric neurology at Johns Hopkins, considers PANDAS an interesting hypothesis but wants more data—in particular, definitive evidence of a causal link between strep and the condition. Not long after the 2010 conference, a group that included Singer, Roger Kurlan from the Atlantic Neuroscience Institute in New Jersey, and Donald Gilbert from the Cincinnati Children’s Hospital Medical Center wrote a paper renaming the disorder CANS, for “childhood acute neuropsychiatric symptoms.” The report, which appeared in The Journal of Pediatrics, argued that CANS had numerous causes, and that they needed to be investigated. It advised that doctors faced with children showing sudden-onset psychiatric conditions should look beyond just evidence of strep. Further, the authors suggested that the PANDAS entity be “eliminated.”

Yes, I would wait on the intunive!

Have you seen this? http://clinicaltrials.gov/ct2/show/NCT01281969 I think the study is almost full... my recommendation is to call ASAP since even if you don't get in or qualify, you might get some guidance or good information.

Really good read! http://thewalrus.ca/a-feverish-debate/

bigmighty!! OH man!!

mkur yes, lots of variables "About those aspirin studies: I would like to add this is about the same time the doctors made it difficult to get your tonsils removed - were freely handing out antibiotics. Then the doctors made it difficult to get antibiotics" Also, when aspirin use declined, Tylenol (see Mayzoo's links) use shot up. It also seemed like docs became less concerned about testing for strep. Also, there are (I think, heard?) there are more strains of strep that don't show a typical sore throat. And different strains of strep...maybe the RF strains have decreased, but maybe the PANDAS strains have increased. Also, there is much more Lyme (and more coinfections). This is due to many factors (eg deer population was 1/2 million 100 years ago, now it is 25 million...so 50x increase). And we all know how Lyme throws a big wrench into things...

If nothing else, it may be something to try on the older PANDAS kids (teens, young adults).

T.Anna, Wow! YAY! I hope he is feeling better soon. Mycoplasma is so tricky, it'd be nice if these kids at least coughed or got a fever so we knew they had something. But no, just increased PANDAS symptoms.

Someone (Swedo I think) briefly mentioned aspirin at the IOCDF meeting (2012). Of course she wasn't "recommending" it, but what she said was interesting enough that dh and I were "hmmm, maybe something to consider." Maybe Vickie (or someone else that was there) can add more? Not sure if the Reye Syndrome link was later disproven (or at least over played). Unfortunately, I didn't take notes on what was said about aspirin. I think there was some mention about how the autism rate went up when aspirin was no longer used in kids (ughh...but maybe has more to do with increase in Tylenol use). I did find this (by Swedo, looks fairly recent?) online (googled) where "impact of aspirin ban" is listed under "other etiologic triggers" http://healthcare-professionals.sw.org/resources/docs/division-of-education/events/cell-death-and-differentiation-symposium/previous-conferences/2011/0900_PANDASPITANDS_Swedo.pdf NOTE: Aspirin is recommended for kids with Kawasaki's. PS. just found this in notes from IOCDF http://pandasnetwork.org/2012/08/iocdf-conference-parent-summary-2/ "Aspirin is not advised by the American Academy of Pediatrics due to possible Reyes Syndrome. However, it has been helpful RF inflammation and should be discussed with your physician as possibly helpful."

Oh, I have no idea about getting to see your results from the NIH. Maybe contact Paul Grant? Maybe they are holding on to the results until the paper is published? Definitely ask. Do you have any idea if they are doing before and after IVIG Cunningham labs? They did that with the first study (at least for the PEX kids, not sure about the IVIG kids).

Thanks Norcalmom! (Great explanation btw.) We are in a similar boat. Our dd is not symptom free (but doing pretty good 85-90%, going to school, happy functional). There is some residual OCD which is clearly from PANDAS (but how much is "habit?"). There are other quirks, traits, anxiety which may or may not be from PANDAS. We are looking forward to repeating her Cunningham test to give us a better idea of where to direct treatment and find out where we stand vs. a few years ago.

My dd takes 250mg/day Azith (started this dose at 7.5 years, 43 pounds).

I think you should also put a little note next to each paper as to what the result was...eg yes, no, or inconclusive due to low incidence of strep infections. etc

Whether symptoms remit when treated with IVIG/PEX? [Perlmutter1999]Perlmutter SJ, Leitman SF, Garvey MA, "Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood", Lancet 1999; 354 : 1153 58 http://intramural.ni.../pubs/pub-5.pdf might add the Turkish adult men with pandas paper to this... http://www.google.com/url?sa=t&rct=j&q=therapeutic%20response%20to%20plasmapheresis%20in%20four%20cases%20with%20obsessive-compulsive%20disorder%20and%20tic&source=web&cd=3&cad=rja&ved=0CDcQFjAC&url=http%3A%2F%2Fwww.turkpsikiyatri.com%2FC18S3%2Fen%2FtherapeuticResponse.pdf&ei=gESmUaL8AePliAKI_IG4Ag&usg=AFQjCNEL0Lh7G3gqDgrDPO_ynhTnTHCkFA&bvm=bv.47244034,d.cGE

I agree with the others re. investigating lyme and other tick borne diseases. Also, if there are sibling(s) (also adults can be carriers) if any one of them is "carrying strep" (throat culture positive, no symptoms) your PANDAS child will react...that was a problem in our household (younger dd is a strep carrer, does clear with Azith). This even happened when I myself got strep (although I wasn't asymptomatic)...PANDAS dd reacted. Once I was treated, her symptoms improved quickly. Mycoplasma is another big trigger with PANDAS kids. My PANDAS dd (even while on azith) got mycoplasma last summer. Her only symptom was increased PANDAS symptoms (we figured out it was mycoplasma later on via bloodwork).

More on Lyme/PANDAS from http://www.latitudes.org/forums/index.php?showtopic=9361&page=1 (P. Mom's visit to Dr. Cunningham in OK) "3. Strep is not the only cause of the neuropsychiatric symptoms. Many other viruses/bacterias can result in the same type of syndrome...but, it is still the same type of autoimmune dysfunction/problem. You won't find strep anywhere in this case.....this would be the PITANDS syndrome. This can also produce high Cam Kinase.....particularly Lyme...it produces high Cam K results. In a viral cause of symptoms, antibiotics will not help...but, steriods can be given to bring the episode under control if the episode is bad enough. Strep induced (bacteria induced) episodes should resolve/diminish with antibiotics."

Buster: also.... Under "My child's PANDAS symptoms are surfacing and the strep test was negative, what's going on? " might be a good place to remind folks that non-strep infections/inflammation/even allergies can trigger symptoms. It does get addressed soon after in: "Q: We had a negative throat culture, does that rule out PANDAS? A: No. A throat culture can confirm GABHS colonization but not rule out PANDAS. It is important to know that PANDAS is not "due to GABHS" but rather thought to be due to auto-antibodies in the blood stream that were triggered by an initial GABHS infection. In Swedo's original 50 cases paper, she notes that "Not all symptom exacerbations were preceded by GABHS infections; viral infections or other illnesses could also trigger symptom exacerbations. This is in keeping with the known models of immune responsivity -- primary responses are specific...while secondary responses are more generalized. Thus, the lack of evidence for a preceding strep infection in a particular episode does not preclude the diagnosis of PANDAS." " But...should actually be in both spots for clarity.

In the first Swedo IVIG / PEX trial PEX was actually better than IVIG. And here's a trial of 4 adult men (pandas since childhood). PEX helped but they were not put on prophylactive antibiotics so the next time they got sick, they relapsed. http://www.turkpsikiyatri.com/C18S3/en/therapeuticResponse.pdf 1tiredmama has your son been checked for Lyme and other tick borne diseases? You might want to revisit that (Lyme culture test?) as Lyme tests are notoriously unreliable. For some reason when you said PEX didn't work for you that is what popped into my head. T. Anna You might want to point out to you psych that there are actually no studies demonstrating efficacy of CBT and/or psych drugs in PANDAS kids (only studies in kids with garden variety OCD). On the other hand, there ARE studies showing that PEX/IVIG helps.

Yes, it will show with Lyme PANDAS/pans.