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The PANDAS Foundation (Pediatric Autoimmune Neuropsychiatric Disorders Association with Streptococcal Infections) has launched its “got strep?” campaign, designed to alert caregivers and physicians to the nontraditional ways that strep can present itself. Early intervention can prevent an obsessive-compulsive disorder (OCD) and Tourette Syndrome.
“Shockingly, there are many children in the United States who are afflicted with obsessive-compulsive disorder (OCD) as there are with diabetes,” says Beth Alison Maloney, the author of ‘Saving Sammy: Curing the Boy Who Caught OCD’ and Founder of the PANDAS Foundation. “My son was destined for a life of hospitalizations and long term placements in treatment facilities until we discovered that strep was the root cause of his OCD and Tourette’s,” says Maloney. “He is now fully recovered and has been symptom free for five years. I want to make sure that no other child suffers needlessly as he did.”
The compelling case for strep-induced mental illness is reported in the article “From Throat to Mind”, which appears in the January /February 2010 issue f Scientific American MIND. Top researchers believe that many cases may be linked to common pediatric strep.
“The Foundation’s first goal is to ensure that no child is diagnosed with a mental disorder before strep is ruled out as an underlying cause,” says Deb Curran, the Foundation’s President. To that end, the PANDAS Foundation, whose website is at pandasfoundation.org, has assembled an army of nationwide volunteers to distribute 50,000 “got strep?” cards. The 4 x 6 cards list the many manifestations of strep beyond the usual sore throat and fever. Distribution efforts begin this week and will target physicians, clinics, schools, day care centers, and parent organizations.
“We plan to bring PANDAS to the forefront of national attention and keep it there,” says Curran. “This campaign is the first step.”
While this is an admirable effort to inform the public of PANDAS, it has become apparent that Ms. Maloney may have lost sight of the true purpose of this campaign in an effort to promote her son and story as THE universal representation of PANDAS, when Sammy’s form of PANDAS is as unique as the spectrum is broad. Tic disorders induced by PANDAS are, by definition, distinct from Tourette’s syndrome although, as even the article above states, could ultimately lead to a full-blown Tourette’s diagnosis if left untreated.
If a huge public awareness campaign is going to be launched, who is the medical expert consulting on the materials to be distributed? What harm will come of incorrect information being disseminated?
I have addressed these concerns at length with Ms. Maloney and, in fairness, she made an adjustment to separate OCD from tics to reflect them as the distinct symptoms they can be (after the first print run, anyway.) However, when the revised version was sent to me tonight, tics were now followed by (Tourette’s), making the second version even more inaccurate and potentially harmful to children with strep-induced tic disorders than the first. When asked where the 11th hour reference to Tourette’s came from, this was her response:
“my kid. and it’s staying.”
As a parent of two children who have been diagnosed with PANDAS but only have motor tics as this time, and no signs of OCD or Tourette’s, I had been looking forward to being part of the “army” to help spread awareness. Just this week we have been battling doctors who refuse to treat our oldest child for the PANDAS they agree he has, dismissing him as a hopeless, untreatable Tourette’s case merely because one very tame antibiotic began to lose its effectiveness after 16 months. Ms. Maloney, of all people, should recognize the danger and disservice in propogating this invalid stance.
Thanks to Ms. Maloney’s narrow view focused on telling her story and distributing literature based on only “(her) son”, complete with a mass media campaign that may perhaps be geared more towards selling books and securing movie deals to the willful exclusion of responsibly addressing how PANDAS impacts many more children suffering from this disease, I, and many other parents, will now be forced into damage control mode to correct the misinformation contained in her calling cards.
As a parent of a child who was able to recover from strep induced OCD, I am extremely grateful to Beth Maloney for all her hard work, giving of her time, personal resources, and willingness to deal with the news and public to assure that PANDAS comes to the forefront in pediatric care in our world! Even if she was out for publicity, here’s to her – she deserves it and is the one who is putting herself and her son out there to get things moving and at times, to be the brunt of negative comments or differences in interpretation. Think of how many children and families will be saved much suffering and trauma. Here’s to Beth and her son!!!!! Thank you from the Montgomery family. I cannot wait to begin handing out our information cards and helping to prevent further unnecessary suffering and illness in children during their formative years. This knowledge is very crucial in that PANDAS critically effects a child’s overall functioning and development. Also, please do not forget all the children who have no advocate or parent willing to fight for them.
And finally, I am not a personal friend of Beth’s but simply saw her on the Today Show with her son and was so relieved to know that we were not alone any more.
Anne Montgomery
I, too, appreciate that her book tour has resulted in media attention for this dreaded condition. She is certainly entitled to write her story in any way she chooses. When it comes to an awareness campaign to inform health care providers, caretakers, educators and the general public about this disorder, it is important to do so accurately and responsibly. The fix for this was as simple as can be. It was she who said that she’d rather base this educational effort on her son’s case specifically. Is that really the point?
I’m sure she would feel the same if someone launched a massive campaign to tallk about OCD (psychosis) or OCD (insanity). Her materials are not only inaccurate, but have dangerous implications in that assumptions will be made, stigmas increased, and greater insurance difficulties and obtaining effective medical assistance may follow. If PANDAS were Tourette’s, we’d be right back where we started, with a referral to a psychiatrist, antipsych drugs, possible institutionalization and no antibiotics, IVIG, PEX or steroids to effectively target this disease.
Everyone can make up their own mind. If you have a child with only mild tics, do you want him/her labeled as having Tourette’s? Or would you like the focus to remain on his specific symptoms and strep as the cause.
I am very happy to see the word about PANDAS finally getting out into the press. In the case of PANDAS, “the internet is ahead of the medicine”. Getting the word out is what will drive more research into this baffling illness. My daughter was diagnosed with OCD and other mental illnesses when she was 7 years old. After reading Beth Maloney’s book, “Saving Sammy”, it gave me renewed interest in PANDAS and I noticed parallel symptoms to her son. For 4 years doctors have not given us much hope for improvement. My daughter was now diagnosed with PANDAS two months ago and now is in the care of a capable physician who was referred to me by the “Saving Sammy” page on Facebook. My heart is with Beth for giving us this renewed awareness and having the moxy to write her book.
I am sorry Emily H. but I entirely disagree–
The NIMH website, url: http://intramural.nimh.nih.gov/pdn/web.htm
Defines PANDAS as follows:
QUOTE: ” PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette’s Syndrome…”
“The children usually have dramatic, “overnight” onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceded by a Strep. throat infection….” (end quote)
I applaud Ms. Maloney for having the ability to GET information into the hands of professionals who may be able to help.
In reading this article, I don’t see Ms. Maloney implying in any way that PANDAS IS tourettes, but rather (as you know sadly from your child’s personal experience) that children (like hers and yours) may be mis-diagnosed as solely having tourettes, or solely having OCD, when in actuality they may have this horrible illness called PANDAS–which can cause these types of “symptoms.”
If you diagnose solely on behaviors you may miss the causality.
I cannot do anything but applaud Ms Maloney for helping to get the word out.
I, too, cannot praise Beth enough for her fight to bring attention to possible underlying causes of supposed “psych”conditions. My son has mild tics and a diagnosis of TS and I don’t have a problem with that. I was finally glad to get a diagnosis after bouncing from Dr. to Dr. This was over 4yrs ago and I wish I would’ve known about Pandas then!
I do not think Beth is pushing her book for sales- she asked me to let 10 other people read my copy. And I paid like $15 or so on-line for it. If you read her book, Emily H, you’d see that hers is not a unique case. In fact, she didn’t even pursue it at first, until the encouragement from another mother with an afflicted child.
I am also encouraging her to go on Oprah or make a movie. She is a wonderful example of a mother’s fight for her child and getting more and more awareness of Pandas.
She does have medical back-up in her son’s case as well. It’s in her book!
I can tell she wants many more positive things for Pandas, nothing negative. Thank you, Beth, thank you!
I, too, want to express my sincere gratitude to Beth and Sammy Maloney for having the courage to share their story. After reading the book, we were able to convince our PANDAS son’s main doctor to try the same high-dose augmentin XR treatment regimen that worked so well for Sammy. After three years of a nightmare that was growing progressively worse with each exacerbation, our son has finally started coming back to us. His crippling OCD and tics have improved dramatically, just by virtue of taking the right dose of the right antibiotic for a longer duration.
Before we started the “Saving Sammy” dose of antibiotic chronicled in the book, we were literally reaching the end of our rope. We did not know what else to try on our son’s behalf, and the future looked grim indeed. I cannot possibly express my family’s gratitude to Beth and Sammy for getting the word out. As Emily H. points out, PANDAS is a complex spectrum disorder, and unfortunately no single treatment works for every afflicted child. But – for our son – the example and prescription in “Saving Sammy” have been miraculous!
Hopefully, the PANDAS Foundation’s informational campaign will spur medical professionals – both clinicians and researchers – to re-examine their assumptions about childhood mental illness and its underlying causes. If more energy is directed at researching PANDAS and treating afflicted children, then I see a much brighter future for millions of suffering kids!
I agree with Leslie P.
The point to get across is to watch out for the “Symptoms”. Whether it is OCD or Tourettes or other symptoms. There are usually more than one or two possible at one time and/or they come and go. My son even fades in and out of ADHD SYMPTOMS. He does not have ADHD, just from time to time the appearance of it. There are other symptoms not on the list, but I suppose you can’t list them all, but the most common are on the list. (Others: small, brown, round bruises on the legs that don’t hurt when touched and pain behind the knees, and others…) My son suffers mostly from the Tourettes “Symptoms” and only a little bit of OCD. All of his symptoms come and go. The key factors to remember are the symptoms that present themselves from time to time and the strep infection that preceded the onset of the symptoms. I hope the result of the campaign is to narrow down the confusion, paint a clearer picture, and make doctors request one simple test immediately upon the question of any or more than one of the symptoms and if the test is positive to immediately start the proper treatment. If the test is negative then perhaps you will start the process to obtain a proper diagnosis of an actual disorder that may be present and not just the symptoms of a known disorder. Thank you Beth for the book and the push to confirm my son’s original diagnosis of Sydenham’s Chorea which is clearly PANDAS and not Syd’s. Good Luck with the Campaign. I hope this campaign reaches Canada. I don’t want anyone to go through what we have gone through – or are still going through. It is too mentally, physically and emotionally draining. I am burning out, imagine what my poor little 7 year old boy feels like! (I will do what I can to help from here- London Ontario Canada – you know me from my emails too.)
I can’t applaud Beth enough for all of her work to raise awareness of PANDAS. She did not have to write a book and create a foundation that is helping other families to properly diagnose their children and get the appropriate treatment so they can lead a life not hampered by symptoms associated with OCD and TS. She could have gone on with her life and career and never looked back. It takes braveness, caring and the desire to help others to put yourself and your family in the public eye like she has done. Saving Sammy is saving other children. Beth’s book and the PANDAS foundation she founded are educating families that have needlessly struggled and anguished. She is giving some children their lives back. She is encouraging families to not give up and arming them to look for a potential physical root cause to their child’s condition.
The PANDAS campaign is fantastic. It is a great way to raise awareness of PANDAS. Thank you, Beth, for all your work to help others. Thank you, Sammy, for allowing your mother to tell your story. Thank you both for caring.
It looks like Beth has a lot of support. Good for you for starting this foundation. I’m sure you went through a lot along the way.
I believe that Beth is a serious and concerned mother who, were it not for learning about the strep-OCD connection, might still be dealing with a son in and out of doctor’s offices and mental institutions. I believe Beth is passionate to get the word out to as many people as possible and every forum in which she can tell Sammy’s story is another large segment of the population which learns that many cases of OCD may be caused by strep or a body’s reaction to strep. Beth could have simply gone on with her own life now that Sammy is happy and healthy. But fortunately for others, Saving Sammy was not enough. She cared enough to devote her life to helping others.
I have been working as a counselor in the school setting for 20 years and what I have learned is that the medical community is not always on the forefront. It takes dedicated parents like Beth to shake things up and not allow children to suffer. Remember when children were institutionalized because of downs syndrome? Thank you Beth for your energy, intelligence and ability to advocate for your son and others.
Our time is NOW! There is no longer a place for “non-believers” or resistance, especially within our own PANDAS families. This disorder is devestating enough. Our children need the unity and the support of our entire nation. Why is it so easy for us to come to the aid of children in Haiti? Our PANDAS children are fighting their own inner battle with OCD and tics and yes, tourettes. That is why Beth Maloney and her son Sammy have chosen to take on this mission. They have seen the destruction of this neuropsychiatric disorder first hand. Anyone who watched Beth Maloney or listened to her in any of her interviews would soon understand who she is and what her purpose is. I for one applaud her and her Pandas Foundation. She has already made a difference. Have you?
Marci Lichtenwalter
Director of Moondance to the Cure
youtube Jamie’s Story http://www.youtube.com/watch?v=p0EyBTuSODA
I think getting the “basic word out” about PANDAS is great. Thanks Beth. However, Dr. Swedo and others are very concerned that she in creating the PANDAS Foundation learn how to send out an accurate message.
There are various ways to get word out about new happenings — I think a blow over the head kind of campaign that she is launching “got strep” will certainly get the attention of docs. Many will roll their eyes; some may consider things more carefully.
It is however ESSENTIAL that the PANDAS Foundation begin to back up their information with input from somone like Swedo or Nikolades; really helping practitioners understand that there is a great deal of nuance to be considered in treating these kids.
As a word of caution; I know of 8 children who have had breakthru strep infections on Augmentin; the Sammy antibiotic of choice. Penicillin is no longer 100% effective in thwarting strep. Sometimes Azithromycin or Cephalosporins are important to use. Re-testing for strep if the child re-exacerbates.
At any rate — Game on ladies — you’ve got the docs attention. Now use it wisely.
I agree with Emily H. We are having the exact same issues with Tourette’s being thrown at us as walking papers by doctorswho refuse to treat PANDAS, despite my child being a textbook PANDAS case and antibiotic responder.
Tourette’s has no place on a PANDAS symptoms list, unless it is clearly spelled out that the symptoms may be mistaken as Tourette’s and untreated PANDAS could lead to the eventual development of Tourette’s. The entire point of this campaign is that PANDAS cases are not dismissed as genetic psychiatric disorders and treated as such.
“’The Foundation’s first goal is to ensure that no child is diagnosed with a mental disorder before strep is ruled out as an underlying cause,’ says Deb Curran, the Foundation’s President.”
Exactly. So why list tics as Tourette’s on a SYMPTOM LIST designed for early diagnosis?
I find it highly concerning that Ms. Maloney would cite her child as her source for formulating these materials. That is blatantly irresponsible. Getting the word out accurately for such a controversial disorder that parents are not only stuggling to have recognized, but to have their children treated as INDIVIDUALS, is critical.
The children’s medical needs come before putting Ms. Maloney up on some sort of pedestal. She did not discover PANDAS – a simple Google search of symptoms led me straight to the NIMH’s page on this condition long before she started making appearances on talk shows. Yes, awareness is key, but I’d rather have no campaign than an irresponsible one. With an effort such as this without the collaboration of the medical community, it is likely the onus will still be on parents to request strep tests. It is doubtful physician’s will take this any more seriously than they are now with a parent-only effort of flyer distributions. It could even result in a backlash.
Tread carefully.
I also am unable to express the full extent of my emotions regarding all of the recent news and buzz that I’ve been hearing about PANDAS. Prior to 1996 I was just the regular kid, enjoying life and loving every minute of it, with no worries what so ever. But then I got strep throat and my life was forever changed. The hell that my family and I have endured is something I would not wish on my worst enemies. I was diagnosed with OCD and a mild tic disorder, but no one knew a lot about these things back then. I was shunned by my elementary school, a “catholic” school and forced to leave all of my friends and everything I had known and go to the public schools. So not did I suffer from my mental disorder, but also I learned at a very young age that society was not tolerant and life was not fair. Throughout the course of my childhood and teen years I was on up to 13 different prescribed medications with innumerable amounts of side effects. It sucked. Towards the end of my high school years as I matured the OCD got better. Now it is pretty much non-existent or under control except when I get very anxious or stressed. But in its place, over the course of the past few years, my motor tics have gotten exponentionally worse. I can deal with it, but it still sucks. Throughout my whole life with these conditions my mom has never stopped for half a second in doing everything humanly possilble to research and find help for me; treatment; a cure. I’m off living my life now, I have my conditions for the most part under control. But I’m still going to try and get on Augmentin because, why not? I’ve had PANDAS for the past 14 years of my life. If I can make that the end of a painful chapter in my life rather than have to deal with it for also for the rest of my life, what a miracle that would be. But more importantly I’m comforted by the idea that because of people like Beth Maloney, the information is out there for people to find help. Just the idea of if I could have done something from the beginning that would have ended my OCD/Tourettes and not have had to battle with them for 14 years and counting….well, it’s almost unimaginable. So I want to send a personal thank you to Mrs. Maloney for all she’s done, because clearly she has the same vigilance that my mother does, and that says something. I’d also like to say that for those people who critize Mrs. Maloney for the manner in which she is getting the word out, I think you’ve really lost sight of what the goal is. The goal is to get the word out and educate people and help those who are in need of help. Obviously yes, she is making money for her book, being on TV, etc. But is she not achieving her goal of getting the word out to those who need to hear it? Clearly the help isn’t coming from the majority of doctors out there who say this is a “controversial” view and “unconventional” treatment; and we all know that the pharmaceutical companies will be the last to jump on board. So who must we look to for help? It’s people like Beth Maloney, who like my mother, did everything she could to help her son whom she loved so much, and just happend to find something that worked. And now she is the bringer of hope and good news to all individuals who have or might someday have PANDAS. THAT is the point; the goal; the main idea; and for that, I am most grateful.
In response to Leslie P.-
She wrote: “In reading this article, I don’t see Ms. Maloney implying in any way that PANDAS IS tourettes.”
I’m afraid Leslie and many others may have completely missed the point of my comment. My objections are NOT to the wording in the press release above. As I stated in my original comment, my problem is with one line of copy on the cards. While to some it may seem like splitting hairs, this one line has major implications. It seems that most of those defending this effort may not even be aware of what the cards say, or they might agree with me.
The final version sent to me lists as a single symptom:
“motor and vocal tics (Tourette’s)”
This is entirely different from the NIMH’s webpage that is very clear to state that children with PANDAS may have “tic DISORDERS such as Tourette’s Syndrome,” and “children usually have dramatic, ‘overnight’ onset of symptoms, including motor OR vocal tics…”
By definition, Tourette’s is genetic, and must include both motor and vocal tics, have no longer than a three month period without symptoms, and last more than one year:
“Tourette Syndrome (TS) is an inherited, neurological disorder characterized by multiple involuntary movements, called motor tics, and uncontrollable vocalizations called vocal or phonic tics.
Diagnostic criteria for Tourette Syndrome (DSM-IV TR) 2
•Both motor and vocal tics are present during the illness, although not always at the same time.
•The tics occur many times a day (usually in bouts) nearly every day or off and on for more than 1 year, with never a tic-free period of more than 3 months in a row. ”
We know that the tics associated with PANDAS do not have to meet this criteria, hence the inappropriateness of listing the wide range of tic disorders associated with PANDAS as Tourette’s on these materials about to be distributed nationwide.
To be sure, there is plenty of conflicting information out there. Generally, Tourette’s is thought of as a genetic disorder. While there may be a genetic predisposition for children who develop PANDAS, the similarities stop there and the key differences begin. If children with with TS like symptoms respond to antibiotic treatment, PEX or IVIg, then Tourette’s is ruled out and PANDAS is confirmed. Research studies have confirmed Tourette’s children do not respond to these treatments. Herein lies the most critical difference.
The bottom-line here is, children are being denied treatment for PANDAS because they are being written off as Tourette’s cases. This is a SERIOUS problem, and as the materials currently stand, this fledging effort spearheaded by the PANDAS foundation is inadvertently going to compound this problem.
I just want to say that, first, I think Beth has done a great job of getting the word out about PANDAS. There is so little known about the etiology of mental disorders overall, including, tics, tourettes disorder (many people have said this is considered a “genetic” condition, but I am fairly certain this is not firmly established–and just to clarify, PANDAS is a biological condition, not a genetic one), OCD, ADHD, or whatever it is that this public awareness movement is a very important one. It raises consciousness about the possibility that a child’s symptoms are due to strep exposure and the autoimmune response that mounts in the body because of it, so testing for PANDAS should be a standard of care for any child presenting with these kinds of symptoms. Hopefully, insurers will come to see the benefit of this and decide to cover the testing routinely. In truth, to speak a language insurance companies understand, if PANDAS is diagnosed and treated properly and the child responds to the treatment, it is a win situation economically. Testing and treatment of PANDAS is not very costly, if it is treated early–if left undiagnosed and not treated, the costs are enormous. But much more important than the monetary aspect is that fact that treatment of PANDAS can save a child and family from unthinkable suffering–when a child has mental illness, it pains everyone involved, and the child suffers on all levels, socially, emotionally, relationally, academically, etc. There is so much to lose without proper diagnosis. The PANDAS stone should be overturned in cases where kids present with tics, tourettes, OCD, etc. (see NIMH link on PANDAS in Leslie P’s post above). And, just for further information, Tourette disorder is really on a spectrum with tic disorders, and while the DSM-IV TR describes symptoms of these disorders, it does not address etiology at all–usually, etiology is a mystery in mental illnesses, so recognition of PANDAS is very, very important to bring more attention to it clinically and in research. I don’t think Beth’s materials are inaccurate or harmful–and she is certainly supported by reputable, even renowned physicians whom she came to know through her son’s plight.
I am in the ranks of those who feel deeply indebted to Beth and Sammy Maloney for the breakthrough of “Saving Sammy” and all the press and attention they’ve brought to PANDAS since its publication. My son was diagnosed with classic OCD at 6; when he was 7, I came across PANDAS via internet research, but I couldn’t find a doctor to take me seriously, particularly as my son was asymptomatic, like Sammy. But after reading the book and contacting Beth via email, I had a renewed “aha moment” and pursued the PANDAS course again. Knowing that both her son and mine were asymptomatic was key, as was going to the extent of getting the correct blood tests run.
Long story short, we’ve been on the long-term antibiotic treatment course for 3 months now, and my son continues to improve. This boy who, just 5 months ago, could not leave his home, attend school, have friends over, sleep through the night, etc., all because of the voracious OCD raging in his head, is well on his way to becoming a new and renewed version of his pre-OCD self. He’s back in school full-time and reclaiming his “math whiz” title. He has his friends over to play. He sleeps through the night and wakes with a smile on his face.
So I owe Beth more than I can ever repay. And if she uses the notariety and access to push PANDAS forward, good for her. She’s never claimed to be a medical professional, and she’s never claimed to have all the answers. She’s only claimed to be an unrelenting, advocating, take-no-prisoners mom in a fight for her son.
As for the accuracy of the information getting out there . . . it is a utopian goal worth pursuing. But PANDAS is a complex issue and a lightning rod for views at both ends of the spectrum, as well as in the middle. I honestly don’t believe anybody could get it all right, all of the time, in the eyes of everyone involved. I’ve read and listened to the top 3 practioners in the “war on PANDAS,” for example, and even THEY do not agree!
With regard to accuracy, however, I do feel compelled to make an important note with respect to Diana P.’s mention of breakthrough strep infections while on Augmentin, “Sammy’s drug of choice.” To be more specific and accurate, Sammy’s “drug of choice” was not Augmentin, but Augmentin XR, a very different formulation of Augmentin and one that provides time-release coverage and a lower clauvanic acid component. The two drugs should not be referred to interchangably, as a PANDAS patient can have very different reactions to each of them; I know because I’ve witnessed my son’s very distinct response to each.
Finally, I’m not sure, but if there’s any inference that Beth or the PANDAS Foundation is advocating any single line of treatment or a single antibiotic, I believe that is also an inaccurate and unfair representation. “Saving Sammy” merely reports what worked for Sammy, but I have never read nor heard Beth suggest that Augmentin XR is THE answer for treating either strep or PANDAS and, so far as I know, none of her work nor PANDAS Foundation work is underwritten by Augmentin XR’s manufacturer, GlaxoSmithKline. Anyone who conducts the appropriate research will find references to strains of strep in different parts of the country that are resistent to various antibiotics, and practitioners tend to have their “favorites,” as well. You and your doctor have a responsibility for vetting the efficacy of any line of treatment you undertake.
Some of us will not like the wording Beth chooses for the campaign. Meanwhile, I, for one, don’t care for most of Swedo’s words as, by virtue of her strict written parameters, my son would never have “qualified” as a PANDAS case at all, though he is definitively suffering from the disorder. I’ve heard similar discouraged comments from dozens of families seeking answers and care for this disorder, but even the pre-eminent researchers and practioners cannot get on the same page . . . yet. So to suggest that there is a single set of “appropriate” or “accurate” terms that everyone involved would readily subscribe to at this point in time is folly. Beth could sign up several of the foremost professionals in the field and they would not agree, and even if concensus was eventually reached, upon publication there would be another five in the PANDAS community who would take issue with some or all of the semantics even then.
In the end, I remain grateful for Beth’s taking up the flag of this PANDAS crusade, but that is not said in order to diminish the substantial contributions that have come before her, such as PANDASNetwork or ACN/Latitudes. I’m not sure why people feel compelled to fight for “territory” or “credit” when we’re all working as best we know how to get this disorder the attention and research it deserves and requires. Beth will tell her story. I will tell mine. You will tell yours. And they are all valid experiences. The PANDAS Foundation cards will open the dialogue, and each of us is free to elaborate upon, caviat, alter or altogether decline to use them in our local battles against this obnoxious disorder and the ignorance that surrounds it.
Cheers to Beth and Sammy! Cheers to PANDAS Foundation, PANDASNetwork, ACN/Latitudes, Swedo, Dr. T., Dr. N., Dr. K., Dr. M., Dr. L. every PANDAS sufferer, every PANDAS parent! May we all focus on what’s important and leave the rest behind.
My 12 grandaughter was diagnosed with ocd and has been on 4 different medications, has just spent 10 days in a mental facility. She tested positive for pandas. My daughter told the doctors about all the information in Saving Sammy, and other articles but they don’t seem to get it. Of course her father is in the military and the insurance won’ t pay for where she needs to go unless its in the tri-care network. I’m going to do all I can to get through with this new “Got Strep?” Campaign so my grandaughter and other children get the help they need to live a normal life. Thank you Beth and pray for our family and others.
My daughter Haley was diagnosed with PANDAs NINE years ago by our Dr. Anne Scott ND. She had just read new studies out about the relationship between strep and OCD. I was at my wits end with the behaviors of my 8 year old whom struggled with Obsessive “Thoughts” mostly and all kinds of physical OCD. My daughter was allergic to two full spectrum of antibiotics so we had to use all kinds of natural remedies to boost her immune system to beat the strep. In 2001 i found the book by Tamar Chansky regarding PANDAs. With this new found knowledge and my healed daughter I share this information with everyone I come in contact with. It may not be the answer for everyone but if it helps just ONE child, hooray!!!!!
Thank you, Beth for bringing this to light. Let’s not argue over semantics. If doctors are dismissing you as Tourette’s and you as a parent feel that is an injustice, as Beth says in her book, “GET A NEW DOCTOR!!” We have all had that fight during this journey at some point…keep pushing…keep seeking…find a doctor who will listen.
I think more people like Ms. Maloney need to come forward so I am coming forward to. My son who is severely autistic from Vaccines became OCD after a child at school bit him and cause him to get Strep. Mainstream Dr.’s do not want to listen to parents about PANDAS and OCD. Thank God For DAN Dr. Elizabeth Mumper in Lynchburg VA. because she listened to me speak for the child that cannot speak. Thanks Ms. Maloney for bringing this to the forefront.
This is a message for Teresa D. noted above from London Ontario, Canada.
Teresa, we live in Ontario, and are desperately looking for someone to treat our son. Do you know of any paeditricians/doctors in the province who specialize in PANDAS?
Any help would be much appreciated!!
If anyone out there could help. My daughter, when she has strep, usually presents with belly ache, bad breath, and she zones out to another world and then comes back around. We have tested for seizures, not there. I keep going back to PANDAS (similar) as it effects the nervous system. Has this happened to anyone or anyone’s child? She zones out for about 3 minutes and then comes back around and then is exhausted. I am at my wits end because it is scary to see her this way. Help.
tics, ocd, even behavioral disorders such as so called, “childhood bipolar disease” are considered a continuum and, like most things in medicine, are very grey. I.e. You don’t have to have all or even more than one or two to be diagnosed with an immune medicated behavioral or hyperkinetic movement disorder, such as motor tics or chorea. i have see many different variations respond to immune therapy. The problem is in this country that we are in a “managed care” state of mind. The insurance industry has done an excellent job deviating us from an open minded type of approach to diagnosis that looks at various variations to a diagnosis. By creating false, “syndromes” they limit distribution of much needed therapy and thus increase their profit margin. i have been in practice now for 17 years, and am happy to see that we are finally aknowledging the existence of immune mediate brain disorders due to “stealth” organisms that thrive under the radar of our immune systems, only to stress the immune system into auto-immunity and disorders such as PANDA syndrome and rheumatic fever in the case of strep, and syphillis dementia in the case of chronic syphillis. Other organisms implicated into stealth type of immune disorders include ebstein barr and Lyme. All responsive to IVIG.