EAMom

Another article http://www.science20.com/science_20/blog/nimh_delivers_kill_shot_dsm5-111138

I got this from PANDASnetwork.org: The NIMH will be hosting a tweet chat on May 8 as part of National Children’s Mental Health Awareness Day from 11 a.m. to noon ET. The NIMH’s Dr. Susan Swedo and Dr. Paul Grant are scheduled to participate. If you are interested in taking part, you will need a twitter account. From 11-12 ET on 5/8/2013, simply search for the hash tag #NIMHchats on twitter and the posts will come up. Then, when YOU post, make sure you add the same hashtag #NIMHchats with every post. This is how your tweets become part of the conversation. To read more about this upcoming tweet chat, please visist http://www.nimh.nih.gov/news/science-news/2013/twitter-chat-on-pandas-pans.shtml.

The new time is Monday May 13th 9pm ET, 8pm CT, 6pm PT

OMG! "Sugar" ("Does this have sugar in it?") was my dd's huge OCD fear (along with fear of weight gain--"Will this make me weight more than 50 pounds?") when my dd's PANDAS was severe (in 2008). It morphed into full blown anorexia nervosa (complete with 20% weight loss, off the charts for her age/height since she was slender to start with) and distorted body image. I can pretty much guarantee that she didn't have any sugar at that point (well, she wasn't really eating much of anything, but esp not sugar.) I just can't go there with saying "no sugar" now...everything in moderation! I would also be careful about telling your kids "no sugar" in case that message turns into a form of OCD. I should note that I never was a parent to say "no sugar" or obsess or talk about it much...about all I did (aside from trying not to buy a lot of junk in the first place) was ask that my kids brush their teeth after something sweet. The intense OCD fear of sugar seemed to stem from a scholastic healthy eating handout (on sugar, and it's content in various foods) from school. We found it stuffed in her backpack 1-2 mo after pandas symptoms first started.

You should reculture about 2 weeks after your last Azith or Clindamycin dose to make sure you really cleared. Did the doc mean remove your tonsils? or your kid's ?

Yup...even though Singer's research (2011 paper, and also the others including 2008 Pediatrics papers--since they were all the same kids) SHOULD have been completely discredited by the Boston Globe article, the damage has already been done with too many other people/places quoting the faulty research. Grrrr. But at least in the future, parents will have some recourse (IF they are on the ball). It's a maddening situation. I wonder if Singer/Kulran know (or care?) how many kids/and families they have harmed with their PANDAS naysaying and bad research? Judging by the Globe article, it sounds like Singer at least, doesn't care one iota.

Good point rowingmom. Unfortunately these 2008/2011 studies "disputing PANDAS" seem to be quoted/referenced far and wide.

Hi Smartyjones, I happened to post it now because I realized Buster, myself, and many others had conjectured early on that the 2008 study (and also the 2011 study based on the same kids) by Kurlan/Singer/Leckman/Kaplan didn't actually have PANDAS kids in them. They were studying older kids with long standing TS pulled from a TS study group with minimal OCD changes etc etc. And, here we actually have (in the Boston Globe) the lead author (Dr. Leckman) confirming that "true PANDAS/PANS cases weren't represented in his study in any meaningful way." This is a complete validation of what we have been saying all along. I thought it was terribly important to point out that it was not only PANDAS parents saying the study was flawed, but also one of the lead authors (Leckman) of the study. I should have posted it back in 2012 when the Globe article first came out, but didn't think to link it to this discussion at the time. (Although I'm sure it got posted elsewhere on this forum.)

Note it is my understanding that these are the same kids used in the 2011 study http://www.sciencedirect.com/science/article/pii/S0890856710008166 which was mentioned in Neil Swidey's 2012 Boston Globe article on PANDAS. "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." In other words, EVEN THE LEAD AUTHOR ON THIS PAPER ADMITS THE STUDY DIDN'T HAVE "REAL" PANDAS KIDS IN IT!

Check for Lyme and other infections (viral, other tick borne infections). I would be so quick to blame her symptoms on Azith...sounds more like Lyme/coinfections lurking. Also, check family members for strep (throat culture). Has she had a sleep study? Does she have tonsils? Is she on good probiotics? My dd has been on Azith since 2008 and have not encountered the problems you describe.

I should add: -My own PANDAS dd has NOT had a T/A (so I don't have personal experience on the matter). -Both Dr. T. and Dr. Latimer are (in general) in favor of T/A prior to trying IVIG...so PANDAS docs are NOT in agreement of the benefit of T/A for the average PANDAS kid. -Dr. Latimer said (at the IOCDF conf) that she is culturing a lot of antibiotic resistant staph from pandas tonsils. -I think pretty much all PANDAS docs would agree that if the tonsils looks obviously diseased, they should come out.

If anybody has access to the full-text, a link would be appreciated. Please note my comments were based on the abstract (since I couldn't find the full-text for free). http://www.ncbi.nlm.nih.gov/pubmed/23518825 Tonsillectomies and Adenoidectomies Do Not Prevent the Onset of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Group A Streptococcus. Murphy TK, Lewin AB, Parker-Athill EC, Storch EA, Mutch PJ. Source 1 Department of Pediatrics, University of South Florida, St. Petersburg, Florida 2 Department of Psychiatry & Behavioral Neurosciences, University of South Florida, Tampa, Florida. Abstract BACKGROUND:: In children presenting with obsessive compulsive disorder (OCD) and/or tics, especially those with a temporal association with streptococcal pharyngitis (e.g., PANDAS; Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus), there is speculation about whether tonsillectomy/adenoidectomy might improve the child's neuropsychiatric course. Our objective was to examine whether removal of tonsils and/or adenoids impacted streptococcal antibody titers, the timing of onset of OCD and/or tics, and the clinical severity of these symptoms. METHODS:: Study participants (n = 112; average age = 9.2 ± 2.4; 44 female) were recruited as part of a prospective investigation of neuropsychiatric phenomena with temporal association to streptococcal pharyngitis and examined by family history, diagnostic interview, physical examination, medical record review, psychological testing, and streptococcal antibodies and divided into surgical or non-surgery groups. The surgical group consisted of children having previously had a tonsillectomy and/or adenoidectomy (n=32). The remaining children were categorized as non-surgery (N=76). Measures of OCD and tic severity, streptococcal antibody titers, and PANDAS classification were compared between both groups. RESULTS:: There were no significant differences as determined by streptococcal antibody titers, PANDAS classification, and OCD or tic severity between the surgical and non-surgery groups. Most participants had surgery before onset of neuropsychiatric symptoms and surgery did not affect symptomology. CONCLUSIONS:: Streptococcal antibodies and neuropsychiatric symptom severity did not differ on the basis of surgical status. From these data we cannot support that tonsillectomy and adenoidectomy are likely to impact positively the course of OCD/tics or streptococcal antibody concentrations My thoughts on this study: 1) SELECTION BIAS IS A HUGE PROBLEM WITH THIS STUDY: There is probably a subset of pandas kids that do benefit from T/A, eg those with chronic infection lurking in their tonsils or those in which t/a actually do help prevent future strep. The selection bias comes info play as the kids that benefit from an early T/a (before pandas starts, or with a recent pandas diagnosis) are unlikely to then travel to Florida to see a PANDAS specialist...since their pandas may have been nipped in the bud (so to speak). In her study there were 32 pandas kids that had previous t/a . For all we know there might have been another 100 (or 1000!) kids (with either established pandas or kids that might have otherwise developed pandas) that were helped (or pandas totally prevented) by T/A that never made it to her door because their pandas was fixed by t/a and so they didn't need a top specialist. 2) ANTIBIOTICS (or lack thereof): since T/A was performed priot to the onset of PANDAS, these kids were presumeably NOT put on prophylactic antibiotics (or a "tonsil sterilizing protocol with clindamycin/rifampin). Isn't this a be a bit like giving a kid (pre pandas) a single high dose IVIG, but NO antibiotics afterwards to prevent strep infections....how well would that work?? And then concluding that HD IVIG is an infective treatment for PANDAS??? 3)IMHO T/A is a PIECE OF THE PUZZLE for treating pandas....not a ONE time cure all for all kids! What this study DOES show is that there are some kids (the 32) whose pandas was NOT cured (or prevented) by T/A alone. Doesn't say how many kids WERE cured or prevented with T/A or how useful T/A is when combined with other pandas treatments (eg IVIG and/or long term abs). From reading PANDAS boards over the years, it does seem that there are a subset of kids who benefit (some greatly) from T/A. 4)A MORE USEFUL STUDY: would be to see if prior T/A affects outcome of a single HD IVIG (eg does it "stick" better)? Of course kids would have to be "matched" for other things like type of antibiotics used (and duration of prophylaxis), age, years affected, severity and type (tics vs OCD) of symptoms... 5) ANTIBODY TITERS: it also bothers me that the study mentions using streptococcal antibody titers but NOT CULTURES. We all know that a many kids with cutlureable strep (and pandas)don't get elevated titers (or a titer rise). My own dd's ASO never got above 31 despite a Cunningham test in the high pandas range (when not in an exacerbation) and in the high SC range after H1N1, and titers drawn at the "right time" (2mo after fever/onset of beh change), AND positive cultures at the time. "Trying to use titers to see if someone has been infected with strep is not very useful." --Dr. Sue Swedo IOCDF conf. 2012

Here's the radiopandas link on stuttering (link from Hayley didn't work for me) http://www.blogtalkradio.com/house-calls/2012/12/13/house-calls-wdr-trifiletti--stuttering-ocd Dr. Gerald A. Maguire is a clinical psychiatrist, a Senior Associate Dean and a professor at the University of California, Irvine School of Medicine. He is widely regarded as one of the world's leading experts on stuttering. In 2010, Dr. Maguire published the first documented case study of PANDAS and stuttering after treating a 6 year old boy for stuttering. In 2012, Dr. Maguire presented his case study at the Irvine Conference on Autoimmune Disorders - PANDAS. On this episode of House Calls w/Dr. Trifiletti, Dr. Maguire will discuss his thoughts on PANDAS, stuttering, anxiety, OCD and the use of pharmaceuticals intreating all of these. Here's a little article on Dr. McGuire http://healthyliving.blog.ocregister.com/2010/11/02/new-drug-makes-uci-doc-a-smooth-talker/25280/

Yeah!! Make sure the siblings clear their strep and STAY clear.

Could you have Lyme? Also, how about an immune workup with an immunologist? How did they diagnose the non group A strep? Will it show up on a rapid? or culture (do you have to order a special one? Can they do strain analysis to see if you are getting a totally different infection each time, or if it is the same strain you aren't clearing? Not sure about non-group a, but for GABHS azith or clindamycin are usually recommended for clearing carriers. My younger dd was a strep carrier, didn't clear on augmentin, but did clear on azith. I don't really believe "just a carrier" is necessarily benign. Swedo said a carrier means "no immune response to strep". (Thus pandas kids can't be considered carriers b/c they have an immune response, beh change, to strep.) The question is, does your PANDAS dd react to your non-group a strep?

What is a P-doc? So you saw Dr. Latimer, improved on the antibiotics she rx'd, but then didn't see her beyond the first visit...and now you are working with a hopkins trained doc (this is actually a bad thing in the world of PANDAS since the biggest naysayer, Harvey Singer is at hopkins)? It sounds like this Hopkins doc isn't actually treating PANDAS, just trying to treat symptoms with psych meds. THe actually underlying issues (Lyme, strep, other infections, autoimmunity) need to be addressed. Not sure why you got referred to an ID doc? b/c of possible Lyme? Suggestion one, see a LLMD, don't rely on mainstream ID doc for lyme diagnosis/treatment. (Oops edit--sorry I see you are working with a LL NP.) Personally, I would make a followup with Dr. L, and or make and appt with Dr. B (although I hear there is a long wait list). I thought a p-doc was a psychiatric doctor, but I may have my acronyms wrong...sorry! We went to see Latimer and because of dd's positive Lyme titer, she sent us to see the ID guy at Georgetown. Why? We don't know - she did not explain. We were caught up in this previously unknown (to us), diagnosis, and we were just going along and trying to manage day to day. Seeing the ID specialist added to our confusion. As I mentioned, he disagreed with Lyme causing psychiatric symptoms, so we didn't understand what the purpose of that visit was. Was Dr. L following a protocol of some kind and crossing the T's before recommending IVIG? Did she want the Lyme treated first and was a spinal tap the way to ascertain ongoing infection? I felt I wanted to clear this first with Dr. L, but as I wrote earlier, she would not do this by phone. We were told by her office staff to make an appointment to see her. My husband and I both felt left in the dark with our only option yet another very expensive visit to answer a few questions. We thought we were entitled to these answers 1. Should we do the spinal tap on a child who is now frightened of everything? and 2. Why should we consider a tap in the first place? I have since talked to a number of parents who say that PANDAS/PANS docs are terribly overworked and cannot get to all the patients out there. I accept this as a reality but at the time, we were uncomfortable with having that kind of a relationship with a doctor. The NP we currently see specializes in Lyme. I can make a phone appointment with her as needed and that is a better fit for us. Hope this clarifies my earlier post a bit. Tx, Heather Hi Heather, Oh! I thought p-doc was Pandas Doc! I think the way to go, as it sounds like you are in the hands of a capable ll np, is to treat the Lyme (and celiacs and other issues.) Eventually your child may need IVIG, and at that point you might want to see another pandas doc. Maybe Dr. Latimer is still mainstream enough where she doesn't refer Lyme to llmd's, just infect dz docs???( Does anyone know about this? ). I think Dr. B (and I assume Dr. t) actually refers patients to llmd's . One approach might also to make an appt with Dr B (I hear he has quite a wait list anyway). Not sure, might take 4-5 mo to get in with him. But, in a few mo of might be good to get another perspective anyway. Also, I suspect he will be more Lyme knowledgeable (vs Dr L) as he is in CT.

Do you clear the strep (recheck throat culture) after your yearly bouts? The definition of a strep carrier is (basically) someone who cultures positive w/out any symptoms. If you don't culture positive while asymptomatic then I wouldn't call you a carrier. I would imagine most people that are carriers don't even know it. Carriers can be cleared (usually azith or clindamycin work best), although these people are likely to become carriers again if reexposed to strep. Our younger dd was a carrier 3x during preschool and kindergarten (after strep notices). She has been clear for several years now (4th gr.) Azith has cleared her each time. The first time we tried to clear her with augmentin, and it didn't work. If you get strep yearly (as an adult) I would say you have a poor immune system against strep. Is it possible there is someone else (your dh?) that is actually the carrier, giving you strep? Also, if your dd might have Lyme, I think it is possible you do to...maybe that is messing with your immune system?

agreed! re Dr. T--I think he is pretty swamped right now, although he is worthy of consideration. I hear that some have trouble with follow up b/c he is so busy. (Although the bottom line is that all the top pandas docs are overextended). re Dr. K-not sure he is a good fit with a child who has celiac, lyme, other issues...I haven't heard of him doing a great job of looking into those types of things Assuming your dd is getting abs (and it was the LLNP that discovered the celiac?) for the Lyme...why not stick with treating that route. You need to address the Lyme (and strep and other infections, and celiac) first and foremost. With Lyme, that may take time. Why muddy the waters with multiple psych drugs (which may mask symptoms, but also cause their own set of problems)? NOTE: I'm not totally opposed to psych drugs in PANDAS kids. My own dd was on a low dose of prozac for years. Where we got into trouble (early on) was when multiple psych drugs were used. You also need to be very careful of the dosing in these kids. From personal experience, it is easy to make things worse with psych drugs and their side effects can look like pandas symtpoms. Are there siblings? I would also throat culture family members to make sure there isn't strep in the household.

What is a P-doc? So you saw Dr. Latimer, improved on the antibiotics she rx'd, but then didn't see her beyond the first visit...and now you are working with a hopkins trained doc (this is actually a bad thing in the world of PANDAS since the biggest naysayer, Harvey Singer is at hopkins)? It sounds like this Hopkins doc isn't actually treating PANDAS, just trying to treat symptoms with psych meds. THe actually underlying issues (Lyme, strep, other infections, autoimmunity) need to be addressed. Not sure why you got referred to an ID doc? b/c of possible Lyme? Suggestion one, see a LLMD, don't rely on mainstream ID doc for lyme diagnosis/treatment. (Oops edit--sorry I see you are working with a LL NP.) Personally, I would make a followup with Dr. L, and or make and appt with Dr. B (although I hear there is a long wait list).

Risperdal scares the bejeezers out of me b/c of the issue with tardive dsykinesia. My understanding is that sometimes it can be permanent.

Curcurmin is a pretty popular supplement among PANDAS parents. It is an anti-imflammatory and has many other benefits: https://www.google.com/webhp?sourceid=toolbar-instant&hl=en&ion=1&qscrl=1&rlz=1T4ADFA_enUS455US457#hl=en&qscrl=1&rlz=1T4ADFA_enUS455US457&q=+site:latitudes.org+curcurmin+pandas&sa=X&ei=mINIUbzxKaOWiALu4oHoDQ&ved=0CEIQrQIwAA&bav=on.2,or.r_qf.&bvm=bv.44011176,d.cGE&fp=cb1461a4e2054007&ion=1&biw=1280&bih=845

Oh, I am sooo sorry to hear this. With what we pay to treat just kiddo and my attempts to boost my immune system so I do not get her sick, I cannot imagine paying to treat six. I hope you have good insurance, but I know much of this stuff is not covered or is out of network. Are they retesting the 3 yr old after treatment or just waiting for symptoms to reappear? I know my kiddos doc did not want to retest her after the first treatment, but when I pushed the issue hard, they retested her and she was still positive and continued to be positive for almost 60 straight days. Now they test her every time I take her in, and I have rapid strep tests I keep at home (bought on Amazon) in case I suspect she is positive. Agree that retesting is VERY important. Other family members that are culture positive (regardless if they have symptoms or not), can affect your PANDAS kid. VERY important to keep strep out of the household. Also, consider having "mom" checked for Lyme if kids are positive (could be congenital, but if nothing else, they are exposed to the same environment).

Just to clarify...there are actually no studies demonstrating the efficacy of ERP (or CBT or SSRIs) in PANDAS kids. Here is a study http://www.ncbi.nlm.nih.gov/pubmed/15507582 that gets referenced a lot on CBT/SSRIs...that combo therapy is most effective for treating OCD (SSRI plus CBT). The problems I have with it are: 1) This study was not a PANDAS study, just 'garden variety ocd'. IMHO we can't extrapolate the findings to PANDAS kids. 2) The study only looks at age 7 and up...can't extrapolate findings to younger kids who may not have the maturity/capacity to engage in CBT or ERP. Many PANDAS kids are younger. 3) many PANDAS parents find that once the PANDAS kid gets medical treatment (abs, IVIG) they don't even need therapy The feedback I get from parents (and also some clinicians, eg Dr. Murphy at the IOCDF conf), is that ERP can be useful for treating residual PANDAS symptoms once the child is already been treated medically. They admit it won't do much for a child in a full-blown exacerbation (think "brain on fire".) I suspect if there is a residual infection, autoimmunity lurking, ERP won't be terribly successful. ERP also requires some cooperation on the part of the child (they have to want to change/fight their OCD). I would also ditto Beeskneesmommy's thoughts...there may be an occult infection. I suspect strep can linger in very small amounts in PANDAS kids (perhaps in tonsils or sinuses and/or intracellularly). My theory is that strep can sometimes act a bit like Lyme, hiding out from the immune system so it is difficult to erradicate. There are just so many reports (Saving Sammy is an example) of PANDAS kids regressing off antibiotics (so they stay on for years). I also believe PANDAS kids don't have a "normal" immune system against strep (so they can't fight it effectively). Also, as Beeknees said, mycoplasma and tick borne infection are another possiblity. And there are a percentage of strains of mycoplasma that are resistent to Azith. I would also be a little cautious about not doing any sort of antibiotic prophylaxis. Be aware that the more exacerbations a PANDAS child has, the more likely (Swedo mentioned the number as 3 in one interview) that the PANDAS will become chronic. (Note: I assume chronic means "treament resistent", that the child won't get back to their original baseline and there is a chance of permanent damage.) And, I do have written down that Swedo did say (in my notes from the IOCDF conf 2012 when Swedo spoke on PANDAS), and I quote "Use of prophylaxis is very important." In other words, don't be too eager to get off antibiotics (consider at least something, pen? to prevent future strep infections). Some seasoned PANDAS docs recommend abs until age 18 (or until PANDAS is a distant memory). I know that may be hard to hear, if your kid's pandas was relatively easy to treat, just consider yourself warned that things can go from bad to worse very quickly with these kids. And, sometimes waiting until they get another strep infection to use antibiotics can be a bit like closing the barn door after the horse has already escaped....but that's my opinion. PANDAS was life threatening in my dd's case (full-blown anorexia) and required hosp. and 3 HD IVIGs. We plan on keeping her on antibiotics until at least age 18.

Yeah...they probably can't say anything b/c it is a double blind study.

2 experiences, 1 good, 1 bad: --Dd went to science camp (with her school) in 5th grade and LOVED it, not problem whatsoever, ate well, slept well, had a great time. --Last summer (summer before 7th grade), she went to a camp with a couple of friends (YMCA) and she had a terrible time. She came back in a flare (even though we had upped her azith to 500mg/day while she was there). Not sure if "something" traumatic happened with another camper or if she was exposed to some pathogen??? Also, (TMI here) she didn't poop the entire time (5 days!!) b/c the camp policy was that someone must accompany a camper to the bathroom. This made dd uncomfortable, so not pooping! E gads. The flare lasted several weeks after camp. I should also note that I've become a bit tick phobic lately, which makes me less thrilled about sleepaway camps (as most are in the woods, where the ticks are).