thenmama

Also... I expect NY Dept of Health and Mechtler are not going to give Dr T or the parents any sort of public mention--seems like a power play-- shoving this dx down everyone's throat. It should really only be publicly discussed as a "possible" diagnosis since the parents & patients haven't accepted it and are still seeking answers. I think it's problematic that Mechtler is still saying anything about this case publicly if he has, in fact, been fired by most/all of these families. And seriously problematic that both Mechtler and NY Dept of Health are claiming the girls are diagnosed if the families don't accept that dx and are still seeking proper diagnosis-- especially since some of these kids have now been named/seen in the public spotlight. I also think Mechtler's guilty of some other serious ethical breaches (regardless of how you feel about the possible misdx/malpractice and his $$ connection to big pharma). For one thing, in going so public with his "diagnosis" and defending it so firmly and vocally, he's subjected these girls, who he claims are suffering a stress-triggered illness (due to post 9/11 anxiety), to significant public scrutiny and so very many ignorant, callous, downright nasty & misogynistic comments about them personally (fakers, witches a la Salem, drama queens, attention-seekers on one hand and since nobody really buys his dx, to all sorts of speculative, and unflattering suggestions re: the real cause: illegal drug/chemical abuse, sexual behavior, cell phone/tech addiction, etc.) that will now remain on the internet indefinitely in relationship to their names. Problematic if this is not the real dx, problematic if it is. Further, I was troubled by his public statements about Thera. He has gone on record saying he hasn't seen her yet, and he needs to see her in order to effectively treat the other girls. He's quoted as saying things like: "Mechtler hopes to find the clue in the one girl who has yet to become his patient, Thera Sanchez.... 'The other girls are following her symptoms, although less severely,' says Mechtler. 'What set her off? We need to know. I am saying right now that we will treat her without charge. Bring her in.'" He's publicly naming a minor who is not his patient as the cause for the other girls' illness, then saying she is the key to understanding/solving all of their illness. So in public eye he's made her both the cause (or ringleader in the eyes of the nasty folks) AND the reason the other girls aren't recovering--looks like scapegoating and bullying to me. Anyway, all the two cents I have time to add for now... TH

The Ny Dept of Health Rep-- Hammond-- is the one who said PANDAS was ruled out, and it's likely he's going on Mechtler's statement that it was ruled out. Pretty sure I've seen another report in which one of the parents said her child hadn't been tested for strep (nevermind all of the other PANS infectious triggers they should be tested for). And I don't think Dr T could already have enough labwork back to rule anything out if he was just going up to see them at the beginning of the week.

I've heard there's a theory that some strains of these illnesses may be more likely to cause PANS in those susceptible-- and have also heard and/or maybe read on here (?) that there have been "outbreaks" or clusters of newly dx'd cases in particular areas which has either supported or perhaps precipitated the theory about the strain variants...Also have seen that resurgence in some conditions- like ARF and SC has been believed to be associated with more virulent strains of the bacteria and know firsthand that our family has one of these terrier-like strains of GABHS-- my son can't go off Clindamycin right now or it springs back-- we're on our way to IVIG now. Was discussing this with a doc the other day who added that it seems likely, especially since it's known this is true with other conditions-- I think Glomerulonephritis and ARF, etc. Briefly mentioned here The following sites seem they might be of interest to us PANS parents: Collection of Strep Strains CDC GABHS Pathogen Surveillance Think I won't be getting much work done today! TH

I wonder if the involvement of a boy will change anything re: the "mass hysteria" nonsense. One of things I've found so distressing about this situation-- beyond how terrible it is for these poor kids and their families--is how gendered it's been. If this was a group of twelve boys-- say the football or basketball teams-- there's no way they'd have given a Mass Hysteria/Psych dx. Conversion disorder is, after all, the new name for hysteria (and even Freud acknowledged symptoms of organic illness in hysterical patients and it's widely accepted that the "hysterics" of that era-- incl Freud's were all or nearly all suffering from misdx'd organic illnesses)... Historically, women have been frequently misdx'd with psychosomatic illness later discovered to have organic causes-- and still are This is a nice quote from Eliot Slater that seems apt for the situation in Le Roy The diagnosis of ‘hysteria’ is all too often a way of avoiding a confrontation with our own ignorance. This is especially dangerous when there is an underlying organic pathology, not yet recognised. In this penumbra we find patients who know themselves to be ill but, coming up against the blank faces of doctors who refuse to believe in the reality of their illness, proceed by way of emotional lability, overstatement and demands for attention ... Here is an area where catastrophic errors can be made. In fact it is often possible to recognise the presence though not the nature of the unrecognisable, to know that a man must be ill or in pain when all the tests are negative. But it is only possible to those who come to their task in a spirit of humility.

I think there's also the possibility that the Dent docs are dx'ing based on their own relationships with big pharma. Conversion Disorder = rx for psych meds-- apparently some kids are on up to 8 or 9. PANS/SC = abx (poss IVIG but that's not going to be big bucks on the pharma end)... So, I dug-- not far!-- and found this: Laszlo Mechtler, MD, Associate Professor, Chief of Department of Neuro-oncology, Roswell Park Cancer Institute, Buffalo, New York; Clinical Associate Professor of Neurology, School of Biomedical Sciences, State University of New York at Buffalo, Buffalo, New York; Vice President, Director, Brain Tumor Center, Director, Headache Clinic, Dent Neurologic Institute, Amherst, New York Relationship Disclosure: Dr. Mechtler has received personal compensation for speaking engagements from Forest Laboratories, Inc., GlaxoSmithKline, Merck & Co., Inc., and Zogenix, Inc. and it seems Dr M was one of 384 doctors who earned over $100,000 in payments from big pharma (the tally compiled disclosed payments to docs made by 8 big pharma companies and only two of the four pharm companies that have paid Dr M as mentioned in the bio/rel disclosure from another site I quoted above were included in this sum of his earnings)... See this where he earned 116 k: Dr M's Pharma Cash Tallying in some of the more recent payments noted here, I get the total at $175,853 (and this is only what's been publicly disclosed and still doesn't include all of the companies that are known to have compensated him. Would be really interesting to know how many of the Le Roy kids are on drugs made by GlaxoSmithKline: which has paid him at least $167,000 since late '09. Also, this is something PANS is likely up against in some medical areas, as well, and could be the root of some resistance to it. Anyway, just another angle coming from cynical me over here... TH

Well, I don't think Insurance would put up a fuss about LT abx-- they're cheap. Any backlash against LT abx is more likely to come from the medical community b/c of abx resistance/fear of overprescribing abx. Insurance will want to exclude IVIG and PEX and anything else that's $$$. Just my thinking, anyway... TH

Just found this on YT: Glad that A) mainstream news "go-to" docs are challenging the non/bs mass hysteria dx these mouthpiece docs are finally becoming PANDAS aware and not afraid to talk about it and call it like they see it when there's reason to suspect it. Okay, he's still on the "strep" page, but there's none of the old "controversial" or "some believe," "the theory is that..." nonsense. It's just, "There's a condition PANDAS that is XYZ..." TH

Hi Vermontmoms, I think we met at the PANDAS docs a while back-- I was there with my dd 12 and ds 7. Just wanted to let you know that my ds has had movement issues like you mention, and space out issues and the docs ordered multiple EEGs-- shorter outpatient and one was inpatient for 48 hours, and all were clean. These issues come and go during flares. At one point he also started having accidents at night when he'd never had them before and for a while he experienced so many accidents during the day it was like he'd never been potty trained. He's very gifted in Math and his speed and ability to produce or express answers is very slow or inconsistent in some exacerbations. My dd's math fact recall is destroyed in exacerbation and she can't automatically answer any of the basic facts she's known for years. Anyway, hope knowing that some of this stuff can be PANS helps you focus on more than one possibility. TH

Add us to the club, both of mine have skin issues. They both get bumps like keratosis pilaris. Ds is prone to all sorts of mysterious rashes. One recurrent one is around the mouth (small red bumps but they never erupt and aren't allergy). He also sometimes gets petechial outbreaks on the face/neck (never on body below the nipple line) always linked in timing to illness/exacerbation. He also has two of the spots similar to the picture linked above- but his have the spidery veins spreading out-- and the center seems not so raised. Presently both kids have all sorts of skin stuff going on: keratosis pilaris (lots if that's what it is), pimples (seemed normal for dd due to age/hormones but ds has never had a pimple and seems to have one whitehead on his chin tonight), a few little raised wart-like bumps on dd's finger and hand, etc. And both are flaring up. Dd mildly so. Ds, who is just over stomach bug, is really escalating. But, he's heading toward tonsillectomy and IVIG soon. TH

Hi Saidie10, I addressed some of this in my post about our insurance appeal a little while ago: link to post Based on what you said in your post I would first counter their claim about the absence of peer reviewed lit -- specifically: Swedo's article was published in the Lancet, which is peer-reviewed and meets their criteria (some BCBS groups use the Lancet as an example of the type of journal that meets the criteria). There are others, too... I'll paste some copy from our appeal docs below. If what you need isn't in there, feel free to ask me for tips or samples from our letter. Also, a question: were your previous IVIGs ordered for the same condition? Or did the Drs order for PANS this time and Immune Deficiency or something else last time? If it's the same diagnosis code, I would add something to your letter questioning their denial of coverage for the same treatment for the same condition that was already covered (and thus considered by the insurer to be both medically necessary AND "proven safe, effective, and durable") FOUR TIMES. The writing will be on the wall for them: there certainly isn't less available evidence for the treatment at this time, so either they stand behind their previous decisions or acknowledge they authorized potentially unsafe, ineffective, "risky" medical treatments for your child in the past. Then again, they're not always so sharp or quick on the uptake, so you might just make that point in plain language for them I'm just resurfacing online-- we were traveling, ds got a stomach bug while we were away so is flaring some now and we're currently working out his upcoming treatments: T&A and IVIG (at least in his case the IVIG is needed for his immune deficiency and he's already met the criteria outlined in our plan for that). Never dull! I'll try to check in more now that we're settling into something of a groove here, so fire away if you have questions or need more info. Good luck! TH from Appeal: There is evidence available in the medical and scientific literature to satisfy the eligibility criteria and support coverage for the requested treatment. The use of IVIG is considered a safe and effective treatment for children with unremitting PANDAS. It is considered part of the standard of care for the condition by the physicians who treat it. There is evidence both within and beyond the research setting to support its use; and based on its standard use as a treatment, as well as coverage for its use by other national health insurers, its use for this condition is certainly not unproven, experimental, investigational, unsupported, or even unusual. Immunomodulatory therapies, such as IVIG and PEX, are considered proven treatments for Pediatric Neuropsychiatric Disorders Associated with Streptococcus and are covered in the policies of other major health plans, such as United Healthcare, Cigna, and Harvard Pilgrim. As an example, the IVIG coverage policies of United Healthcare and Harvard Pilgrim plans are included with this letter. The medical information database produced and provided to members by Aetna and Kaiser Permanente contains information about PANDAS written by staff pediatrician Michael Sexton, and reviewed by Neurologist Karin Lindholm. The information includes the following statement regarding treatment: “Treatments for children with PANDAS are the same as used for symptoms of OCD or tic disorders. This includes cognitive-behavioral therapy or medicines or a combination of both. Treatment may also include immunotherapy like IVIG or plasma exchange. Immunotherapy is a treatment that uses the body's own immune system to treat an illness. You and your doctor can decide which treatments are best for your child.” A paper published in Clinical Practice and Epidemiology in Mental Health, another peer reviewed journal, “What Every Psychiatrist Should Know About PANDAS: A Review” (enclosed) notes that immunomodulatory therapies, IVIG and PEX, are effective and provide lasting benefit to patients with severe, unremitting PANDAS symptoms. The American Academy of Allergy, Asthma and Immunology’s 2005 Position Statement on the Appropriate Use of Intravenously Administered Immunoglobulin (IGIV) includes a statement on PANDAS under the category “other uses.” The position statement notes that beyond the abundance of anecdotal evidence supporting the benefit of IVIG, PANDAS had evidence-based support for its use, since a controlled trial demonstrated efficacy in defined PANDAS patients, unlike similar trials for other disorders such as Chronic Fatigue Syndrome and Autism, which did not yield evidence of benefit. While the paper is now more than five years old, and the evidence, clinical use and insurance coverage for the use of IVIG for PANDAS has developed considerably since then, it is still worth noting that as far back as 2005, the AAAAI Work Group Report supported IVIG as evidence-backed, effective treatment for patients with PANDAS. In making the benefit determination for our child, XXXX did not reference a well-documented, widely-cited 1999 study, published in The Lancet, documenting the results of a randomized controlled trial of Plasma Exchange and IVIG in patients with PANDAS by Dr Susan Swedo, of the National Institute of Mental Health, whose research first discovered PANDAS and who has been its lead researcher and expert since that time (study included with this letter). The study showed that use of Plasma Exchange (PEX) and IVIG were effective treatment of PANDAS, and showed long-term benefit (with IVIG showing superior results to PEX, and no demonstrated improvement in the placebo group). The Lancet meets the peer-reviewed journal criteria referenced in our policy guidelines. In the article “Evidence-Based Guidelines on the Use of Intravenous Immune Globulin for Hematologic and Neurologic Conditions,” also published in a qualifying peer-reviewed journal, two panels of experts in neurology and hematology convened to consult evidence, evidence-based reviews, and consensus of expert clinical opinion in order to create evidence-based, expert-informed recommendations for the use of IVIG. The authors state, “IVIG is recommended as an option for treatment of patients with PANDAS. Based on consensus by the expert panel, diagnosis of PANDAS requires expert consultation.” The guidelines contained in this article have been established as the standard for IVIG treatment in Canada. The following is from the US National Institute of Mental Health’s PANDAS information page: What about treating PANDAS with plasma exchange or immunoglobulin (IVIG)? The results of a controlled trial of plasma exchange (also known as plasmapheresis) and immunoglobulin (IVIG) for the treatment of children in the PANDAS subgroup was published in "The Lancet", Vol. 354, October 2, 1999. All of the children participating in the study had clear evidence of a strep. infection as the trigger of their OCD and tics, and all were severely ill at the time of treatment. The study showed that plasma exchange and IVIG were both effective for the treatment of severe, strep. triggered OCD and tics, and that there were persistent benefits of the interventions. However, there were a number of side-effects associated with the treatments, including nausea, vomiting, headaches and dizziness. In addition, there is a risk of infection with any invasive procedure, such as these. Thus, the treatments should be reserved for severely ill patients, and administered by a qualified team of health care professionals. The NIH is not currently conducting any trials with immunomodulatory therapies, and so is not able to offer either of the treatments. Our child’s case was severe, as determined by her treating physicians who see children with PANDAS. Our child was unable to function normally and could not maintain her usual activities of daily living. Some of the symptoms she experienced in this period of infection-triggered exacerbation are as follows: ****Note: after you document the published evidence, you'll want to show how your child's condition aligns with the cases for which IVIG is indicated as outlined in the literature-- to preempt the potential "not medically necessary in your child's case" comeback should the appeal go to round 2*** Here's some more on both the "severity of condition" and evidence fronts: As further evidence of the severity of her case, she participated in Dr. Madeleine Cunningham’s University of Oklahoma research study on Cam Kinase II Activation and Antineuronal Antibody Elevation in PANDAS and Sydenham’s Chorea (the same procedures are used by the NIMH for its research on PANDAS and its treatments). Our child’s Cam Kinase II activation at 187 was near the top of the PANDAS/low Sydenham’s Chorea range and her antineuronal antibody levels were significantly elevated (about 4 SD). For more information on the significance of these results see the article included with this letter, Antibody-mediated cell signaling behavior in movement disorders by Cunningham, Kirvan, Snider, Swedo. Journal of Neuroimmunology 2006. In the paper “Infections and Autoimmunity: A Panorama,” published in The Clinical Review of Allergy and Immunology, 2008, it is noted in the section “Post-Streptococcal Syndromes: Rheumatic Fever and PANDAS” that: “PANDAS is related, at least epidemiologically, to group A streptococci infection, and clearance of serum IgG through Plasmapherisis and IVIG reposition has been associated with remarkable improvement of PANDAS.” It is also noted in this paper that “Anti-basal ganglia antibodies are associated with this disease.” As noted above, our daughter’s anti-neuronal antibodies were significantly elevated and her Cam Kinase II activation value was extremely high for PANDAS, as tested by the University of Oklahoma study. This level of Cam Kinase activation and elevated antineuronal antibodies was not found in subjects who had Obsessive Compulsive Disorder (OCD), the “mental condition.” **** note the wording here is b/c that's what our insurance company used in its denial letter Also relevant to our child’s case is the study noted at the end of the NIMH information: “An Open Trial of Plasma Exchange in Childhood Onset Obsessive-compulsive Disorder Without Poststreptococcal Exacerbations.” In this study it was shown that immunomodulatory therapies did not benefit children whose OCD was not the result of an autoimmune/infection-triggered neurological condition. This is an important distinction. Our child has OCD secondary to, or as one of many symptoms of, an autoimmune neurological disorder— not a mental/behavioral health condition. The autoimmune/physical nature of her illness is why the IVIG treatment was so effective for her. a list of citations from our appeal letter: Murphy, T. Storch, E. Strawser, M. Selective Serotonin Reuptake Inhibitor-Induced Behavioral Activiation in the PANDAS Subtype. Primary Psychiatry, 2006; 13 (8) 87-89. http://www.fda.gov/RegulatoryInformation/Guidances/ucm125126.htm http://www.fda.gov/RegulatoryInformation/Guidances/ucm126486.htm [21 CFR 312.3(] http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfcfr/CFRSearch.cfm?fr=312.3 [21 CFR 312.3(] http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfcfr/CFRSearch.cfm?fr=312.3 Samir S. Shah, MD; Matthew Hall, PhD; Denise M. Goodman, MD, MS; Pamela Feuer, MD; Vidya Sharma, MBBS, MPH; Crayton Fargason, Jr, MD. Off Label Drug Use in Hospitalized Children, ARCH PEDIATR ADOLESC MED. March 2007; Vol. 161. American Academy of Pediatrics Committee on Drugs. Uses of Drugs Not Described in the Package Insert (Off-Label Uses), Pediatrics. July 2002; Vol. 110 No.1 American Academy of Pediatrics Committee on Drugs. Uses of Drugs Not Described in the Package Insert (Off-Label Uses), Pediatrics. July 2002; Vol. 110 No.1 Sexton, Michael. Lindholm, Karin. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus (PANDAS). Healthwise, 2009. Moretti, G. et al. What every psychiatrist should know about PANDAS: a review. Clinical Practice and Epidemiology in Mental Health. May 2008. American Academy of Allergy, Asthma, and Immunology (AAAAI). Work Group Report on the appropriate use of intravenously administered immunoglobulin. 2005. Leitman, Susan F.; Garvey, Marjorie A.; Hamburger, Susan; Feldman, Elad; Leonard, Henrietta L.; Swedo, Susan E.; Perlmutter, Susan J.. Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood. Lancet (0099-5355). 10/2/1999; Vol.354,Iss.9185;p.1153-1158. Anderson, D. Brouwers, M. Feasby, T. Hume, H. Robinson, P. Evidence-Based Guidelines on the Use of Intravenous Immune Globulin for Hematologic and Neurologic Conditions. April 2007; Transfus Med Rev S3-8. http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions-about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal-infections.shtml Nicolson et al: An Open Trial of Plasma Exchange in Childhood Onset Obsessive-compulsive Disorder Without Poststreptococcal Exacerbations. J Am Acad Child Adolesc Psychiatry 2000, 39[10]: 1313-1315.

Just want to add that one of our children's response to Azith was similar to Vickie's child's-- she worsened the first few days on it, then started to improve. In our case, we are pretty sure dd does not have Lyme or other co-infections-- her tests were negative and her PANDAS treatment has been quite successful (knocking on wood...)so far. But I remember prior to her IVIG when she went on a course of Azith she'd worsen for a few days-- to the point I wondered if we should stop it-- then things would settle and we'd start seeing improvement. I was documenting and charting her symptoms for the docs at the time, and it's amazing how consistent the timing of the reactions and subsequent improvements were over several courses. For us, it was worth sticking it out through the first few days because the medication was ultimately beneficial-- but as you noted, every child is different. It's great that you were able to video your son for the doc-- it should help him to actually see what's going on and decide how to proceed. I hope you will see things start to improve soon! TH

We were on a waiting list for a neuropsych eval at KK-- which was arranged for us by a doc who runs a center that's in a partnership w/ KK. She had spoken to someone about our son when the KK docs were at her center for a meeting and they initiated it for us. We did the initial phone call, paperwork, etc. We were on the list to be contacted "soon" by the team to schedule our appointment... months and months went by and we heard nothing. I did call and check in a few times and we were supposedly still on the list. We ended up getting some of the info we were looking for from an eval ds was had for something else, and our other reasons for seeking the eval at KK became irrelevant, so we moved on and forgot all about it. Then, out of the blue after well over a year-- I think almost two, can't remember exactly now--we got a form from them in the mail asking us to fill it out and send it back if we still wanted to maintain our place on the waiting list for an appointment-- I was shocked. I can't imagine how I'd have felt if I'd really needed that appointment! TH

Sign me up for a tee! Says I, whose ds began a new ritual out in the holiday-shopper-packed stores during our errands yesterday: must walk in teeny tiny baby steps and must do "eeney meenie" to determine which foot to lead with every time we stop and start walking again...

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Peg-- So sorry you and Allie have been going through this! My ds is on Clinda-- he has to have it as his primary/ongoing abx for now b/c it is the only thing that's kept his recurrent strep rash at bay. Our PANDAS doc has adjusted the dose and has him take it only 3 x a day instead of the recommended 4-- but he's also past the acute infection phase now. We've done the 4x/day abx with various family members in the past-- bit of a pain but you've gotta do what's you've gotta, right? As you mentioned, we can give the S. Boulardi at the same time as the Clinda, since it's a yeast not a probio. The probio is trickier when you have a 3-4 x/day abx regimen-- but we homeschool so have more flexibility on that front. What does she have for snack or lunch at school? Any chance you could mix probio into something she'll be having-- if that would be the appropriate timing and there's something she'll eat it can be mixed into? I'll sometimes stir it into applesauce, yogurts, smoothies, etc. Even being at home I time the kids doses around feeding if possible because I find it easier to manage with things combined on our schedule--fewer interruptions to our day and less likely to miss doses if given around feedings b/c no matter what we're doing in a day the kids still need to eat. Sorry to report that when we did the 4x/day abxs in the past the docs did want us to wake for dosing Good luck and please keep us posted. Hope Allie continues to improve! TH

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