mommybee

I just got back my child's EBV results. VCA IgG and IgM were negative, but EBV nuclear AG (EBNA) was positive. Any thoughts about what this could mean?

I have two thoughts. The first is whether this could this be a focus problem. Attentional difficulties are a symptom of encephalitis. The second is about auditory processing. When the subject matter being discussed is complex (i.e. a lecture about involving new information in the classroom, or about something socially challenging), people with auditory processing difficulties often need more time to process the incoming auditory information. How old is your daughter? HIgh school can be challenging for bright students who have unidentified auditory processing glitches. Fine tuned neuropsych testing may be indicated.

My child got better. Now 100%

Hi Janny- While those are crazy high numbers, the American Academy of Pediatrics advises against antibiotic treatment unless titers are rising. They are instructed to assume titers are falling in the absence of two sets of lab results so in all likelihood most traditional doctors (those who take insurance) will prescribe antibiotics without further confirmation of a current bacterial infection. I am not familiar with Dr. Orman-Lubell, but Dr. Trifileti is quite expensive and doesn't take insurance. Worse, he charges for "phone consults" to provide lab results. People swear by him, but his care doesn't come cheap. I have two thoughts. First, if not too far, Dr. Bouboulis is an immunologist Fairfield County who takes insurance for office visits. He also does more sophisticated Lyme testing than that which was offered to your son. The best Lyme test is the Western Blot through Igenex in CA. This test isn't covered by insurance, but is relatively inexpensive (a few hundred dollars for Lyme and co-infections). If you don't want to lay out the cash, Stony Brook Laboratories in New York runs a decent Western Blot test, but you must be sure that the doctor requests that ALL the bands be reported out. Their test is covered by insurance. I'd provide more information, but that's hard to do without knowledge of your child's symptoms. I hope this is helpful and not information you already have.

I only skimmed the chain, but have you checked for Lyme and co-infections? I've heard that Dr. T. isn't the best for diagnosing and treating tick borne diseases. The headaches sound more like Lyme than PANDAS, however a sinus infection could cause spirochetes to gain momentum which would cause a worsening of symptoms. Just a thought.

I hope all is going better for you T. Anna and that you had a good holiday. It's a good thing that you dropped that doctor. It's never a good sign when a doctor at a big teaching hospital can't even spell the word "medicine". If you don't find what you are looking for in Drs. Trifileti or Hollander, I would recommend Dr. Bouboulis in Darien. Unlike Dr. T, he takes insurance for office visits and treats both PANDAS and Lyme. While not ILIADS trained himself, he consults with Dr. Charles Ray Jones who is the granddaddy of pediatric Lyme Disease. We have seen both doctors with excellent results. Please feel free to message me with questions or for further information.

I need to chime in here too. Dr. Geller is the absolute best! While he certainly prescribed anti obsessional medication for symptom relief, he was also open to their discontinuation when my child didn't respond to them. Dr. Geller is tremendously knowledgable, available, responsive and compassionate. We so appreciated his conservative, research based approach. At the end of the day it was probably antibiotics that cured my child. However without the medicine he prescribed for symptom relief (anti inflammatory medicines turned out to be most effective), and the amazing the support of the Pediatric CBT program (mostly for habit reversal once strep was cleared), we might not have come out on the other side unscathed-- or at all! I have no experience with the PANDAS clinic and have only heard what we all did at the conference in Providence. Our family's experience with the pediatric OCD program at MGH couldn't have been better. Please feel free to message me with any questions, if you like.

IEPs are only used in public schools. Public schools are legally required to educate all children who live in their district and ensure that they make effective progress. Private schools are not required to provide special services for children with special learning needs. Furthermore, PANDAS (or even OCD) are not, in and of themselves, reason for services or accommodations. However, Section 504 of the Americans with Disabilities Act (ADA) prevent institutions that receive state funding (or tax breaks) to discriminate against students who have disabilities. The statute is available online. You might want to check out the Office of Vivil Rights web pages for a more detailed expiation. The bottom line is that if you can show (this usually requires professional documentation) the school that your child has a disability that substantially impacts a major life activity (schooling qualifies), your child will be entitled to accommodations p. Extended time is an accommodations. Because school personnel tend to be suspicious of parents who seek testing accommodations as children move from elementary to middle school or middle school to high school, I would advise you to proceed with caution if you want to be offered an enrollment contract for next year. If you can afford it, you might want to consider getting a full neuropsych evaluation. Typically, the usual way to get accommodations is to present the school with an educational testing report done by a licensed neuropsychologist that shows that the student either has a specific learning disability or slow processing speed. The testing includes ability testing (usually the Wisc-IV), achievement testing (either the WIAT or the Woodcock Johnson) along with other inventories to assess specific strengths and weaknesses. The report would need to say that because of a slow processing speed, attentional deficits or anxiety, the student would be unable to demonstrate what he learned in a test setting without extended time. If you feel that such testing would be therapeutically destructive p, another approach is to ask you sons licensed psychologist to write a letter which includes the following information: the diagnosis (I think you're better off using anxiety or OCD than PANDAS because everyone understands what they mean and if you go with a medical diagnosis, your son's ability to participate in athletics may be limited), the length of time that your son has been receiving therapy (how long the therapist has known your son), the diagnostic tools that the therapist has used (the Y-BOCS?) and severity of the illness, the last time your son was seen and the date of their next appointment. Additionally, the therapist would need to state that you son's anxiety level in a test setting would be expected significantly reduce his processing speed and ability to concentrate and that without extended time he would be at a disadvantage relative to his up encumbered peers. Depending on how your school is set up, the point person with whom to initiate the process will vary. You may find the answer to this in the student or parent Handbook. If not there, I would recommend that you inquire of your son's advisor, home room or team leader, or the director of academic support (if your school has such a person). Before you assemble documentation of the problem and the way in which it impacts learning and the ability to demonstrate that learning, you will not be prepared to have this conversation and less likely to accomplish your goal. I doubt your doctors/psychologists need a boilerplate letter. I'm sure they have written these before and know the drill. Please feel free to message me if you have questions. I am an educator. Good luck.

Having gone through the process, here are my thoughts: Start the process early. Cognitive flexibility is difficult when anxious. The more think time your son has to ready himself for this transition, the better. Visit schools where your son is likely to gain admission easily first. This will relieve anxiety about acceptance and free him to think about what would be the best learning environment for him. Be way ahead on the standardized tests. Apply for test taking accommodations now so that you can appeal decisions that you don't like. (ACT only offered half of the accommodations we requested. With further documentation, we were able to get him what we thought he needed.) In addition to extended time, your son may be eligible for segmented tests-- half on one day and the other half on another. While students who receive double time take the test in two sittings, those who get time a half are required to take the entire test in one sitting without a pre arrange additional accommodation. Your son might also benefit from test taking environment modifications. The SAT subject tests have score choice. Students can retake them as many times as they want and only send colleges his best scores). These tests are only an hour long without extended time so you might want to sign him up for the January or March test date (probably Math or Literature) for practice. This shouldn't be stressful because he likely won't be sending the scores anywhere. College disabilities services have much better awareness of psychological issues and provide better supports than you are probably accustomed to if your son is not in a therapeutic placement. Probably because they are not required to provide an education to everyone college support services only the playing field. As Nancy D. mentioned, your son will not have an IEP in college that includes direct services. Instead, he will be given accommodations which allow him to access the curriculum himself and demonstrate what he has learned. This orientation is often more well suited to students whose learning needs stem from anxiety rather than from more organic cognitive deficits. College websites are often quite transparent. Though they vary, you can get an excellent "feel" for their general orientation and the kinds of supports that are available. Read these carefully. Should your son not be ready to go begin college two years from now, you might want to consider a fifth year of high school or possibly a PG year at a nearby boarding school. This arrangement would provide many of the supports of high school while also allowing independence. He would also have an additional year to improve his academic record. Boarding schools, should you go that route, typically also provide excellent college counseling services as well. If your son is academically but not emotionally ready to separate, you and he might consider his attending college close to home as a commuter for the first year with the plan to move onto campus when he's ready. Please remember that the world of PANDAS is one of abrupt change. A year ago, my son couldn't go to school full time. His anxiety was so high that he was unable to participate in any after school activities or socialize with his friends. Keeping his academic house in order was so exhausting that it was all he could manage. You're wise to begin to think about what supports he may need down the road, but do be aware that your efforts may turn out to have been needless. Good luck and enjoy the process. This may be the last time that your voice will be the loudest.

If you are paying out of pocket anyway, why not just go to see somebody else. I was just at the NE Conference and heard Dr. Kenneth Bock speak and was very impressed by his knowledge, intellect, flexibility and careful approach. He is an integrative doctor with a strong following. We're not patients but I have a friend who swears by him because he cured her daughter. From what I hear, his office is professional and organized and his pedigree is top tier. http://www.bockintegrative.com/

The conference was extremely well run and the speakers were excellent.We were told that all of the powerpoints would be uploaded onto the website. http://www.nepandasparents.com/resourcesandnews.html

If it's any help, it's far cheaper to fly to NYC or Boston from most parts of the country than directly into Providence. Boston is about an hour and a half from Providence by car or train. Amtrak goes directly from Newark to Providence and the conference is walking distance from the train station. Airfare tends to be cheapest early in the week. I've read that people should book air on a Tuesday for the best rates. Where theres a will, there's a way?

I am excited to be attending! For all those who live in the Northeast, this is an opportunity to hear about cutting edge research and treatment. I've taken the liberty to past the schedule and link for anyone who wants to go. This program is open to the public. NE PANS/PANDAS Conference Saturday, November 9, 2013 7:30 – 8:15 a.m. Breakfast/Opportunity to Network 8:15 – 8:30 a.m. Opening Remarks Northeast PANS/PANDAS Parents Association founding members present conference survey results 8:30 – 8:45 a.m. Welcome Diana Pohlman, Founder & Executive Director, PandasNetwork.org 8:45 – 9:30 a.m. From PANDAS and PITANDS to PANS: Recognizing and Treating Acute-onset Obsessive Compulsive Disorder in Children Susan Swedo, M.D., Chief of the Pediatrics and Developmental Neuroscience Branch (PDN) in the intramural research program at the National Institute of Mental Health (NIMH) 9:30 - 10:15 a.m. Elucidating mechanisms of immune cell entry into the brain and blood-brain barrier damage in an animal model of recurrent intranasal Strep infections Dritan Agalliu Ph.D., Assistant Professor, Developmental & Cell Biology, School of Biological Sciences, UC Irvine 10:15-10:30 a.m. Break 10:30-11:15 p.m. The Spectrum of Illness in PANDAS-PANS: There is no One-Size-Fits-All TreatmentBeth Latimer, M.D. Pediatric, Adolescent and Adult Neurologist 11:15 - 12:15 p.m Question and Answer PanelDritan Agalliu, Beth Latimer and Susan Swedo 12:15–1:30 p.m. Lunch 1:30–2:15 p.m. Mechanisms of Pathogenesis and Treatment in Autoimmune Neuropsychiatric Disorders Dr. Kyle Williams, M.D. Adult and Child Psychiatry, Yale Child Studies 2:15–3:00 p.m. Unlocking movement and neuropsychiatric disorders in children Dr. Madeleine Cunningham, PhD., Co-Founder and ChiefScientific Officer, Moleculera Labs 3:00- 3:15 p.m. Break 3:15-4:00 p.m. What 700 Families have Reported About Their PANDAS-PANS Child: NOW Where is Treatment Headed For Our Children’s Future? Diana Pohlman, Founder & Executive Director, PandasNetwork.com 4:00-5:00 p.m. Question and Answer Panel Madeleine Cunningham, Diana Pohlman and Kyle Williams 5:00 - 7:00 p.m. Reception (optional, not included with conference price) Sunday, November 10, 2013 8:00- 8:15 a.m. Opening Remarks NE Pans/Pandas Parent Association Members 8:15-9:15 a.m. – The neurobiological basis of PANDAS/PANS - scientific and clinical perspectives Rosario Trifiletti, M.D., Ph.D 9:15– 10:00 a.m. - A Comprehensive Integrative Medicine Approach to Neuroimmune Disorders (PANDAS/PANS) Dr. Kenneth Bock, M.D., Founder, Bock Integrative Medicine 10:00-10:15 a.m. Break 10:15-11: a.m. Immune dysfunction and modulation in PANDASDr. Jolan Walter, M.D., PhD, Massachusetts General Hospital 11:00-11:45 p.m. Applying Exposure and Response Prevention to Youth with PANDASDr. Jamie Micco Ph.D., MGH Child Cognitive Behavioral Therapy Program 11:45-12:45 p.m. Lunch Break 12:45-1:15 p.m. Recovery Stories Megan Greenstein and Malia Ott 1:15-2:00 p.m. Medication and Behavioral Modification Peggy Chapman 2:00-2:45 p.m. Treating LYME in your PANS/PANDAS child Jeanne Hubbuch, M.D. 2:45-3:00 p.m. Break 3:00-3:45 p.m. Advocating for your PANDAS childBeth Maloney J.D., Author, Attorney, Medical Advocate 3:45 – 4:45 p.m Panel Q&A / Discussion Peggy Chapman, Jeanne Hubbuch, Beth Maloney, Jamie Micco 4:45-5:00 p.m. Closing Remarks Peggy Chapman http://nepandasparents.com/conferenceregistration.html

I don't know about the IgG, but the IgM from the two labs appear to be more in sync.

My kid was on that combo along with Bactrim to fight strep and Bartonella and he did fine. When his strep titers began to fall, his doctor took him off the Augmentin and substituted Cefdinir to act as a prophylactic because it's easier on the stomach. This treatment has been very successful. He is currently virtually symptom free. Strep titers are descending and his bart rash is fading.

My child has never had a positive strep test. He gets sore throats. He gets fever. He feels awful, but the culture always comes back negative. We treat and he gets better. Only weeks later when we'd run the blood work,do we know for sure whether it was strep or not.

I agree with you POWWOW. Misinformation is dangerous. PANDAS, by definition, involves strep. Sadly, Beth who is a PR genius, is spreading misinformation. This won't be productive. Sooner or later, she is going to realize her mistake and pull back. Hopefully she will not have alienated too many doctors and patients who understand the difference between PANDAS and the myriad of other issues that can cause conduct disorders. Her book and her media blitz about her son were tremendously helpful. She helped to educate parents who were then able to get treatment for their children who were suffering. But she's gone overboard. Hopefully she'll rein it in before too much damage is done. I don't know whether you noticed or not, but she said that Grant Accord had a strep titer of 950. I wonder what that meant. An ADB or ASO blood titer result immediately following an infection would not, in and of itself, indicate anything other than a recent strep infection. To meet the diagnostic criteria for PANDAS, a temporal relationship must be established between a strep infection and OCD and/or Tourettes. Strep titers are only of diagnostic value when a temporal relationship between rising titers and very specific symptoms exists. Beth knows this. Her mention of Grant Accord's single strep titer result was intended to lend legitimacy to the claim that he had PANDAS. It failed. Instead, like her rant at the beginning of this thread in which she tried to link the Newtown shootings with PANDAS, made clear what she was after. Publicity. Sad.

I am grateful for information too. Like you, Niclemama, I figured out that my child had PANDAS and brought it to the attention of our doctors. I also think that public outcry can put pressure on politicians, Peglem. But public outcry doesn't sway the medical community and doesn't fund research. It just doesn't. Publicly linking a disease with symptoms that aren't a part of the disorder undermines the process. It alienates the medical community. Doctors will become less likely to listen to what their patient's mothers are saying. Misinformation is dangerous. Grant Accord's diagnosis is highly speculative. Entirely hearsay. There is simply no peer reviewed research that suggests that PANDAS leads to sociopathy. Not one shred. I do not want my child or his illness associated with symptoms that he doesn't have. I doubt any PANDAS parent does. So if the media is fed misinformation that it reports to the public, I am going to keep quiet about the diagnosis, not because I'm ashamed but because I don't want the people to think that my child is a budding psychopath, when he isn't. I can understand why parents of children who have comorbid conduct disorders might be less worried about this. Nonetheless, it's not in anyone's interest for the parents of children who fall under the strict diagnosis, receive proper treatment and get better, to fall silent. WE are the one's who could be championing the cause if we weren't silenced. After all, WE have the voices the the medical community can hear. I think Beth and her followers have made a mistake on this one and if she continues on this trajectory, sooner or later, people are going to stop listening. Beth is very smart. I'm sure she will ultimately come to realize that her reputation is at stake and begin to measure her words more carefully. She does not want the medical community to view her as a loose cannon who doles out inaccurate sound bites. And she certainly does not want the handful of PANDAS doctors across the country to stop taking her calls. But they will if she continues in this vein.

Agreed. Good clear information is hugely helpful The Child Mind piece was another recent good one. RE: the case study, I certainly want to do the right thing and, of course, know that names are never used. We've been so lucky to have had such an uncomplicated presentation and such amazing medical care. I want to give back. But we haven't achieved complete remission of symptoms (though they have been abating at a break-neck pace since as the strep titers have descended). When my child is 100%, I'll make the call. Sadly, I won't be spreading awareness through word of mouth anymore. Beth has effectively muzzled me. I doubt that I'm alone on this.

Beth Maloney is responsible for linking of Grand Accord and PANDAS in the media. Why? To raise public awareness. The problem with her logic (and apparently the logic of many people on these boards) is that public awareness doesn't fund research. The medical community is not any more influenced by media hype than they are by our anecdotal stories. Treatment protocols are based on peer reviewed studies not guest appearances on network television. Yet, we are a sound bite culture. Connecting PANDAS with horrible acts of violence will stigmatize children who have been diagnosed with the disorder and silence their parents. My child is on the back nine. I am no longer in the emotional place that I know some of you are. We were lucky. Antibiotics alone were curritive and we didn't have to address comorbid symptoms separately because there weren't any. In short, my kid was one of the few who actually fit the narrow diagnostic criteria that so many of us would like to see broadened. I had the poster child. Telling our story could have been helpful. (I've actually been approached by a member of our treatment team who is a major researcher in the field about whether I would give my approval to use him as a case study.) But after this media blitz, I'm going to be very careful about what I say publicly. My child isn't, has never been, and isn't likely to become violent and I won't allow him to be stigmatized. Should he get strep again and develop symptoms, I doubt I will ever again call it PANDAS. Going forward, I shall err on the side of vagary. While she has done much good, I think Beth's efforts this time were ill conceived, if not self-serving.

I have read the peer reviewed research. It provides clear diagnostic criteria for PANDAS and its symptoms. Sociopathy isn't among them. The media circus that Beth is trying to create isn't going to fund additional research and her suggestion that the Newtowne incident was PANDAS driven is nothing short of irresponsible. Beth isn't a medical authority, but she's a heck of a publicist. She has a conflict of interest. Media buzz = book sales

What is a myco p carrier? I was recently tested to make sure that I wouldn't infect my PANDAS kid and was found to have titers that are sky high. While my elevated strep titers were brought down with a simple course of Zith, nothing seems to impact the mycoplasma pneumoniae results. Since learning about this, I've been prescribed a 30 day supply of Minocin, Azithromycin, Clindomycin and Biaxin, all at high dosages to no avail. My IgG has remained at >5 and my IgM is 1200+. I am completely asymtomatic. Does anyone have any thoughts about whether this is a problem for me or my kid and if so, what I should do about it.

The facts on Grant Accord's situation are highly speculative. Beth is not a medical doctor and has no business weighing in on the cause of his antisocial behavior, especially since all of her information is hearsay. He may or may not have PANDAS and it doesn't really matter. PANDAS symptoms are OCD and tics, not sociopathic behavior. Something else was clearly going on with the kid. Sadly, while Beth and her cronies are busy raising awareness (and promoting their own businesses), they are stigmatizing children who are suffering with PANDAS, Tourettes and OCD. Will this force PANDAS families into the closet? It might. I certainly plan to be more careful about sharing my well behaved, socially and academically successful child's exact diagnosis with school personnel because after reading the media hype, it is probably in his best interest for me to be less forthcoming. I do not want him associated with anyone who would want to blow up a school. His life is hard enough.

Here's the much more balanced follow-up put up by the Child Mind Institute that Lauren referred to. May 28, 2013 | Caroline Miller An Oregon teenager was charged with aggregated attempted murder today for plotting to blow up his high school. Seventeen-year-old Grant Acord was caught with an arsenal of bombs and bomb-making material secreted under the floorboards of his bedroom, along with checklists and diagrams with which, it is alleged, he hoped to outdo the Columbine killers. The already disturbing story took another painful turn today when his mother reported that he was suffering from PANDAS. That's the rare and controversial form of acute-onset OCD that is linked to strep infections. PANDAS—it stands for pediatric autoimmune neuropsychiatric disorder associated with streptococcus—is a syndrome which can come on virtually overnight, after a child has contracted a strep infection. Symptoms include tics and the severe obsessions and compulsions associated with OCD, as well as a host of disorienting behaviors, including intense separation anxiety, sleep disruption, handwriting changes, trouble eating, panic attacks, irritability and emotional outbursts. Parents describe their children as suddenly unrecognizable, and conventional treatment for OCD doesn't work effectively—you can read more about it here. It's troubling whenever an act of violence is associated with a particular psychiatric disorder, because it's easy for people to stereotype other people with the disorder, wrongly, as prone to violence. In this case it's particularly troubling because parents of kids with PANDAS are already in a very tough spot because of dissent within the mental health community about how to treat PANDAS, and whether, in fact, the disorder actually exists. Acord's mother's attorney has been quick to use the disorder to build a defense, telling the press that the teenager is "very mentally ill" with PANDAS. As Dr. Jerry Bubrick, the head of the Child Mind Institute's OCD program, puts it, "That statement will do nothing but increase the stigma about a condition that is already so misunderstood." Dr. Bubrick says that although a small percentage of kids with PANDAS may have explosive episodes in which they are violent, "it tends to be more impulsive and situational, and the child is usually remorseful afterwards. That is very different than premeditating a violent attack, which involves conception, planning and precision. Although both are expressions of anger, their intentions are very different and should conceptualized differently." Parents of kids with PANDAS already face daunting confusion as well as skepticism from those clinicians and researchers who don't consider the link between PANDAS and strep conclusively proven. Despite efforts to resolve the conflict—including a new broader category called PANS (pediatric acute-onset neuropsychiatric syndrome) that does not specify the link with strep or any other form of infection—the teams are still far apart. The ongoing controversy makes treatment extremely difficult for parents to obtain, and we hate to see any more challenges added to their lives, and those of their children. http://www.childmind.org/en/press/brainstorm/pandas-ocd-and-bomb-plot

We had a similar experience with Dr. Jones and I never went back for the follow up. I did, however, have a phone consult when my son reacted badly to a steroid burst. Dr. Jones confirmed my intuitive feeling that the steroids needed to be stopped because they were causing Lyme symptoms. He was otherwise of little use. I wouldn't rule out Lyme if you live in New York or New England because the WB has false negatives. With a positive band 31, your son probably was exposed. Band 41 could be anything, including strep. Does your son have elevated ASO or ADB? If so, I think band 41 would pick this up. Have you considered removing your son's tonsills? I've read that it can be a magic bullet for some kids. Have you tried IVIG? What does Dr. B say your options are? He's very systematic. Has your son been tested for Lyme co-infections? Bartonella, Ehrlichia, Babesia symptoms sometimes overlap with PANS. Have you considered doing the new Cunningham test? My heart goes out to you.