Buster

I'll go for EAMom's suggestion to pull the percentage. I think this will work. We'll see. Buster I can. Any paper you've run across that cites it? No, I don't - it is frequently listed in OCD signs, but I can't find a % in a research paper. Maybe tomorrow when I am not so wiped. But as I have been thinking about this today, I suppose that I am really just talking about contamination fears - as opposed to an older child that might fear something more like a specific disease (AIDS), young kids tend to think of this as the worst end result. But all of the fear of throwing-up was around contamination - whether by spots on food, red marks, black marks, chemicals, germs, high levels of sugar - it was never body image, it was always fear of illness. So I'd retract & say that contamination fears covers it.

For us, turning back the pages occurred in the first 2 weeks post IVIG. It was like watching the last year on fast reverse. So intensity was about the same (maybe a little less -- or we were ready for it) but the episodes were really brief. We got through 70 weeks of symptoms in 2 weeks. Buster

I would strongly recommend against using a steroid burst unless the child is clear of a harmful bacteria like GABHS. Steroids work by suppressng the immune system response. This means that if the child has GABHS, it is even more likely that the bacteria will grow without check. If it is PANDAS and in particular if you are in an exacerbation, ensure there isn't strep first. Buster

I agree -- and this is very close to what happened for us where we had to essentially force feed -- I can't believe how many calories we tried to get into our child in a single meal. WorriedDad had the same issue (I think) and I think 3-4 other posters on this forum. I was torn about leaving the numbers off (which is what I did first) and then thought that it helped by saying these occur a lot. Even at 2%, I'd probably pay attention .... Let me see what I can find... Buster

Let me see if I can weave more of this in. I am trying to accomplish a couple things. One to have a post we can pin which represents a position of what we think the NIMH website should say (so we can refer people to it :-)) and two, to actually submit material to the NIMH website to fix stuff they got wrong. I'm of course totally willing for them to take whatever we post here (doubt they'll do so), but at least I can send them the material. On their web site, the most damaging items are the recommendation of SSRIs (despite evidence that this causes higher activation rates) and the reliance on ASO titers despite strong science that this is an unreliable test. Buster

I agree and was willing to put that on a FAQ page (i.e., us parents say this) or we have annecdotal evidence of it. Got any paper that we can cite for the claim? I can cite the Kaplan paper on intracellular strep but that's a bit dense for this post.... let me see what else I find.

Yes, night terrors (other than nightmares) are absolutely in that space.

I too think that anorexia in PANDAS children is > 2% but unfortunately Sokol's work stopped and the 2% number comes from the Swedo study. The reason for citing every statement is so that there's a research report that is backing up the comment. Hopefully there are no unsupported opinions on the page at this time. If you find something with a higher incidence rate for anorexia, I'm happy to update - our own daughter had anorexia nervosa and didn't have the fear of choking but rather the fear of weight gain (in a 7 year old). Thanks, Buster

Hi, I'll pull this out to another thread soon. While it's still in this form, would you have recognized your child from this description. I'm thinking that while my original goal was to send something to NIMH, I'm now realizing that something for parents might be equally (more) helpful. I loved the section about "How to recognize OCD in children" -- really great thread.... How about a FAQ?

Hi laura_s -- Sorry to hear about your situation.... So he had high strep titers but he wasn't put on antibiotics? Did you run a throat culture? Buster

I can. Any paper you've run across that cites it?

I'll continue modifying the base of this thread (i.e., edit the post) until it incorporates the feedback or until I can't figure out how to keep it both short and accurate :-) Eventually, I'll pull this out to a new thread and try again. I really appreciate all the suggestions and revisions. Nothing like peer-parent review :-) By the way, please continue to edit/recommend -- the thing about being a research scientist is that I'm used to having my papers picked on so don't mind in the least. Buster

I have the paper. I'll cite it. Buster

Hi Kim and EAMom, Obviously I too am very sensitive to this and want to get this "chronic" across -- I do think there is confusion between the work by researchers to have a very narrow band to study (the "definite A" and "definite B" and "definite C" style -- where they have to have rising ASO and have a throat culture and have rapid onset and have a response within 4 weeks of exposure and ... -- whereas the reality is likely a spectrum. I can always add to the material "annecdotally we see this" or "many parents report that" or ... but I haven't yet found a good paper (or at least don't recall a good paper) that I can reference indicating this less "obvious" form.... Perhaps mentioning work on the raised anti-neuronal antibodies and then stating that these occur in children with more chronic conditions would work. Suggestions for rewording? I know I'm turning this into a group editing exercise -- but I think the point being discussed is critical to get out there. The scientist in me wants to just cite peer reviewed articles, the realist/parent in me knows that "you observe in the field and explain in the lab" Buster I hope i'm commenting on the right thread. Thanks for that thought EAmom. I've been struggling with the question, if it's even worth mentioning that the description, would still have made me walk away from really investigatiing the PANDAS aspect as I did all of those years ago. We just lived on amox. here. The Ped even asked me if the tics came on with the strep, but we always had strep. When I questioned "yet more amox." I was told that it was just like water on fire, where strep was concerned. Always wondered why 3 rounds were required if that were so. Youngest was finally pronounced a carrier and only treated if he had active symptoms. If parents focus on abrupt onset and remission, I think there will be more kids that fall through the autoimmune cracks, whether it's strep or viral at that point.

See if modification to main page addresses your comment. On your last item, I'm hoping to make this a stick thread for this forum so we essentially publish our own page too.... Buster

See if the bullet items help. My belief is that an astute parent will bypass the diagnosis part and go to the symptom part -- i.e., then go get a diagnosis :-)

I'm fine with putting a definition of OCD on the list. PANDAS actually requires a DSM IV diagnosis of OCD or a diagnosis of tic disorder. Swedo defined the term as being a subset of those two diseases. Let me put those OCD and tics on the list at the top -- and see if that helps. It's in the sentence before. While it is likely that sub clinical OCD symptoms exist in a lot of PANDAS kids, technically, they require a diagnosis. Buster

Hi, recommending a truce... If there's one thing I learned through this PANDAS experience it's that having my child sick left me physically and emotionally exhausted... I remember a doctor was starting to ask me if my daughter ever had a negative throat culture and I darn near took his head off ... he was just asking... Wishing all our children get and stay well ... Buster

Brief explanation of PANDAS -- signs, symptoms, treatment, and research http://www.latitudes.org/forums/index.php?showtopic=6265

What is PANDAS? PANDAS is a pediatric autoimmune disorder characterized by the dramatic onset of neuropsychiatric symptoms such as obsessions, compulsions, motor or vocal tics [swedo1997]. PANDAS is thought to be similar to Sydenham Chorea where there is dramatic symptom exacerbation following a strep infection[Kirvan2006]. Signs and Symptoms: Children with PANDAS must be initially diagnosed with Obsessive Compulsive disorder or a tic disorder [swedo2004]. These children may have some of the following symptoms that accompany the OCD or tic disorder [swedo1998][Moretti2006]: Obsessions (e.g., preoccupation with a fixed idea or an unwanted feeling, often accompanied by symptoms of anxiety) Compulsions (e.g., an irresistible impulse to act, regardless of the rationality of the motivation) Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance) Emotional lability (e.g.,irritability, sudden unexplainable rages, fight or flight behaviors) (66%) Personality changes (54%) Age inappropriate behaviors particularly regressive bedtime fears/rituals (50%) Separation anxiety (46%) Oppositional defiant disorder (40%) Tactile/sensory defensiveness (40%) Hyperactivity, impulsivity, fidgetiness, or inability to focus (40%) Major Depression (36%) Marked deterioration in handwriting or math skills. (26%) Daytime urinary frequency/enuresis (12%) Anorexia (particularly fear of choking, being poisoned, contamination fears, fear of throwing up) PANDAS/OCD is a clinical diagnosis, often marked by the sudden onset and extreme symptom exacerbations (such as an increase of +18 points on the OCD CY-BOCS score during an exacerbation [Murphy2004]). The abrupt onset and remission after eradication of streptococcal infection separates the child from non-PANDAS OCD[swedo2004]. Many parents can pinpoint a day or a week when behaviors changed [Çengel-Kültür2009] When a child has primarily vocal and motor tics, the symptoms may appear to overlap with symptoms of Tourettes Syndrome; however, the children can be differentiated by observing symptom exacerbations over time [Pavone2006]. In PANDAS children, a streptococcal infection precedes symptom exacerbation and once treated, initial exacerbations generally remit. The rapid onset with significant remission is characteristic of PANDAS. Researchers have described chronic PANDAS [Pavone2006] where the tics and/or obsessive-compulsive disorder have a much more gradual course. These cases are difficult to separate from non-PANDAS tics or OCD. Some researchers have found other immunologic markers (anti-neuronal and anti-basal-ganglia antibodies) that help separate PANDAS and non-PANDAS children[Kirvan2006]. Diagnostic tests: At this time, there are no commerically available tests for diagnosing PANDAS. There are ongoing research trials that indicate there are differences in specific antibodies that can be tested in blood serum. [Kirvan2006] [Church2006][Martono2007]. These are recent findings and the accuracy, repeatability and specificity of the results are not known. Additional research funding is needed to repeat the experiments at independent laboratories and confirm the diagnostic effectiveness. A throat culture for Group A Beta-Hemolytic streptococcus (GABHS) at time of exacerbation onset is recommended to diagnose a pharyngeal streptococcal infection [swedo2004]. If the culture is negative, a blood test may be able to test for streptococcal exotoxins. A common blood test is Anti-Streptolycin O. While this test can confirm a previous strep infection, it cannot exclude a prior infection or a diagnosis of PANDAS. This test is affected by many factors and in one study over 46% of children did not have a rising ASO titer despite having colonized strep [shet2003]. For children affected by PANDAS, a GABHS infection is considered to be the triggering event that causes an initial episode. However, as is the case with Sydenham’s Chorea, subsequent PANDAS exacerbations may be triggered by recurrent GABHS, or by other bacterial or viral infections (ear infections, sinusitis, pneumonia, meningitis, impetigo) further complicating diagnosis [swedo1998]. Treatment: Streptococcal infections are treated with antibiotics. Cognitive Behavioral Therapy (CBT) has been shown to be effective in some children with PANDAS and to provide families with coping strategies during a PANDAS flare [storch2006]. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006]. In addition, there is a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for children in the PANDAS subgroup. Several reports have shown effectiveness of immunomodulating therapy (IVIG and PEX) in combination with longer term prophylactic antibiotics[Perlmutter1999]. In addition, several studies have shown efficacy of longer term prophylactic antibiotics alone [snider2005]. These treatments are still considered experimental and have several risks. Some physicians will use a prednisone steroid burst for a short period of time to assist in diagnosis of an auto-immune disorder. Immunomodulating therapies are not effective for Tourettes Syndrome or other non-PANDAS OCD cases, again separating the child with PANDAS [Nicolson2000]. Getting Help: PANDAS was only identified in 1998 and as such is a recent disease [swedo1998]. Additional research is needed to identify the most effective treatment protocols. Taking copies of recent studies to your doctor may help them diagnose and treat your child. You may need to interview pediatricians, neurologists and immunologists. For referrals to local doctors with experience, one source is a parent’s support group at http://www.latitudes.org/forums/index.php?showtopic=3928. Research: PANDAS is thought to be caused by the following sequence of events in this order: The production by the immune system of an antibody that can interact with neuronal tissue [Kirvan2006] A failure of the immune system to suppress this antibody A breach of the blood brain barrier such that the antibody reaches neuronal tissue [Yaddanapudi2009] All three areas have active research results and require duplication of experiments to help reach consensus in the research community. For those interested in a brief history of PANDAS research, please see http://www.latitudes.org/forums/index.php?...amp;#entry36300 Other considerations: Other autoimmune illnesses that may cause sudden onset OCD and other neuropsychiatric disorders include: Lyme Disease, Thyroid Disease, Celiac Disease, Lupus, Sydenham Chorea, Kawasaki’s disease, and acute Rheumatic Fever [schneider2002]. Some children have been found to have Immunology challenges such as IgG subclass deficiencies. Children will need to be evaluated for this issue by an immunologist. In addition, while there is good evidence of anti-neuronal antibodies in PANDAS, the diagnosis remain controversial primarily due to the observations by Johns Hopkins researchers who have not been able to detect such antibodies in their research subjects [Martono2007]. References [swedo1997] S Swedo et al, “Identification of Children With Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections by a Marker Associated With Rheumatic Fever”, Am J Psychiatry 154:1, January 1997 http://ajp.psychiatryonline.org/cgi/reprint/154/1/110.pdf [Kirvan2006] Kirvan CA, Swedo SE, Kurahara D, Cunningham MW, "Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea". 2006 Autoimmunity 39 (1): 21–9. http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf [swedo2004] Swedo SE, Leonard HL, Rapoport JL.” The pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS) subgroup: separating fact from fiction”, Pediatrics. 2004 Apr;113(4):907-11. http://pediatrics.aappublications.org/cgi/reprint/113/4/907 [Moretti2008] Moretti G, Pasquini M, Mandarelli G, Tarsitani L, Biondi M (2008). "What every psychiatrist should know about PANDAS: a review". Clin Pract Epidemol Ment Health 4: 13. http://www.ncbi.nlm.nih.gov/pmc/articles/P...5-0179-4-13.pdf [swedo1998] Swedo SE et al., “Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections: Clinical Description of the First 50 Cases”, Am J Psychiatry 155:2, February 1998. http://ajp.psychiatryonline.org/cgi/reprint/155/2/264 [Çengel-Kültür2009]Çengel-Kültür2009, et al. "The relationship between group A beta hemolytic streptococcal infection and psychiatric symptoms: a pilot study", The Turkish Journal of Pediatrics 2009; 51: 317-324, http://www.turkishjournalpediatrics.org/pe...pdf_TJP_674.pdf [Murphy2004] Murphy TK, Muhammad S, Soto O, et al. “Detecting pediatric autoimmune neuropsychiatric disorders associated with streptococcus in children with obsessive-compulsive disorder and tics”, Biological Psychiatry, Volume 55, Issue 1, Pages 61-68, January 2004 http://www.journals.elsevierhealth.com/per...0704-2/abstract [Pavone2006] Pavone P, Parano E, Rizzo R, Trifiletti RR (2006). "Autoimmune neuropsychiatric disorders associated with streptococcal infection: Sydenham chorea, PANDAS, and PANDAS variants". J Child Neurol 21 (9): 727-36. http://jcn.sagepub.com/cgi/content/abstract/21/9/727 [shet2003]Shet A, Kaplan EL, Johnson DR, Cleary PP, “Immune response to group A streptococcal C5a peptidase in children: implications for vaccine development”, J Infect Dis. 2003 Sep 15;188(6):809-17. http://www.journals.uchicago.edu/doi/pdf/10.1086/377700 [storch2006]Storch EA, Murphy TK, Geffken, G et al, “Cognitive-Behavioral Therapy for PANDAS-Related Obsessive-Compulsive Disorder: Findings From a Preliminary Waitlist Controlled Open Trial”, Journal of the American Academy of Child & Adolescent Psychiatry: October 2006 - Volume 45 - Issue 10 - pp 1171-1178 http://www.ncbi.nlm.nih.gov/pubmed/17003662 [Murphy2006]Murphy TK, Storch EA, Strawser MS, “Selective serotonin reuptake inhibitor-induce behavioral activation in the PANDAS subtype”, Primary Psychiatry, 2006;13(8):87-89, http://mbldownloads.com/0806PP_Murphy.pdf [Perlmutter1999]Perlmutter SJ, Leitman SF, Garvey MA, “Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood”, Lancet 1999; 354 : 1153 – 58 http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf [snider2005]Snider L, Lougee L, Slattery M, Grant P, Swedo S. "Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders". Biol Psychiatry 57 (7): 788–92. 2005 http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf [Nicolson2000]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 http://www.ncbi.nlm.nih.gov/pubmed/11026187 [Yaddanapudi2009] K Yaddanapudi, M Hornig, R Serge, J De Miranda, A Baghban, G Villar, W I Lipkin Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection Molecular Psychiatry August 11, 2009 doi:10.1038/mp.2009.77 http://www.nature.com/mp/journal/vaop/ncur.../mp200977a.html [schneider2002]Schneider R., Robinson M., Levenson J., “Psychiatric presentations of non-HIV infectious diseases: Neurocysticercosis, lyme disease, and pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection”, Psychiatric Clinics of North America, Volume 25, Issue 1, Pages 1-16 http://www.ncbi.nlm.nih.gov/pubmed/11912935 [Martono2007]Martono D, Church A, Giovannoni, G, “Are antibasal ganglia antibodies important and clinically useful?”, Practical Neurology, 2007; 7: 32-41 http://pn.bmj.com/content/7/1/32.extract

modifed.... Perhaps I'll pull it out to it's own topic once we beat on it a bit more. Every claim needs foundation in a research paper. I have well over 300 papers and so am trying to keep it short and hopefully easy to read.

A revised version, see what you think... What is PANDAS? PANDAS is a pediatric autoimmune disorder characterized by the dramatic onset of neuropsychiatric symptoms such as obsessions, compulsions, motor or vocal tics [swedo1997]. PANDAS is thought to be similar to Sydenham Chorea where there is dramatic symptom exacerbation following a strep infection[Kirvan2006]. Signs and Symptoms: Children with PANDAS must be initially diagnosed with Obsessive Compulsive disorder or a tic disorder [swedo2004]. In addition, these children may have some or all of the following sudden onset symptoms: Emotional lability (e.g.,sudden unexplainable rages, fight or flight behaviors) daytime urinary frequency/enuresis Personality changes ADHD Anorexia (particularly fear of choking, being poisoned, contamination fears) Choreiform movements (e.g., milk-maid grip, fine finger playing movements in stressed stance) Age inappropriate behaviors particularly regressive bedtime fears/rituals Separation anxiety Tactile/sensory defensiveness Marked deterioration in handwriting or math skills. [swedo1998][Moretti2006] Diagnosis of PANDAS/OCD is generally a clinical diagnosis, marked by the sudden onset and extreme exacerbations, such as a mean increase of +18 points on the OCD CY-BOCS score during an exacerbation [Murphy2004]. The abrupt onset and remission after eradication of streptococcal infection separates the child from non-PANDAS OCD. Many parents can pinpoint a day or a week when behaviors changed [swedo2004]. When a child has primarily vocal and motor tics, the symptoms may appear to overlap with symptoms of Tourettes Syndrome; however, the children can be differentiated by observing symptom exacerbations over time [Pavone2006]. In PANDAS children, a streptococcal infection precedes symptom exacerbation and once treated, initial exacerbations generally remit. The rapid onset with significant remission is characteristic of PANDAS. A throat culture for Group A Beta-Hemolytic streptococcus (GABHS) at time of exacerbation onset is recommended to diagnose a pharyngeal streptococcal infection [swedo2004]. If the culture is negative, a blood test may be able to test for streptococcal exotoxins. A common blood test is Anti-Streptolycin O; however, this test is affected by many factors and in one study over 46% of children did not have a rising ASO titer despite having colonized strep [shet2003]. For children affected by PANDAS, a GABHS infection is considered to be the triggering event that causes an initial episode. However, as is the case with Sydenham’s Chorea, subsequent PANDAS exacerbations may be triggered by recurrent GABHS, or by other bacterial or viral infections (ear infections, sinusitis, pneumonia, meningitis, impetigo) further complicating diagnosis [swedo1998]. Treatment: Streptococcal infections are treated with antibiotics. Cognitive Behavioral Therapy (CBT) has been shown to be effective on some children with PANDAS and to provide families with coping strategies during a PANDAS flare [storch2006]. Caution is recommended for using SSRI's with PANDAS/OCD as there are reports of higher activation rates in such cases [Murphy2006] and there is a a lack of controlled studies showing safety and efficacy of anti-tic or anti-OCD medications (e.g., SSRI and anti-psychotics) for PANDAS children. Several reports have shown effectiveness of immunomodulating therapy (IVIG and PEX) in combination with longer term prophylactic antibiotics, [Perlmutter1999] or longer term prophylactic antibiotics alone [snider2005]. These treatments are still considered experimental and have several risks. Some physicians will use anti-inflammatory drugs for a short period of time to assist in diagnosis. Immunomodulating therapies are not effective for Tourettes Syndrome or other non-PANDAS OCD cases, again separating the child with PANDAS [Nicolson2000]. Getting Help: PANDAS was only identified in 1998 and as such is a recent disease [swedo1998]. Additional research is needed to identify the most effective treatment protocols. Taking copies of recent studies to your doctor may help them diagnose and treat your child. You may need to interview pediatricians, neurologists and immunologists. For referrals to local doctors with experience, one source is a parent’s support group at http://www.latitudes.org/forums/index.php?showtopic=3928. Research: PANDAS is thought to be caused by the following sequence of events in this order: The production by the immune system of an antibody that can interact with neuronal tissue [Kirvan2006] A failure of the immune system to suppress this antibody A breach of the blood brain barrier such that the antibody reaches neuronal tissue [Yaddanapudi2009] All three areas have active research results and require duplication of experiments to help reach consensus in the research community. Other considerations: Other autoimmune illnesses that may cause sudden onset OCD and other neuropsychiatric disorders include: Lyme Disease, Thyroid Disease, Celiac Disease, Lupus, Sydenham Chorea, Kawasaki’s disease, and acute Rheumatic Fever [schneider2002]. Some children have been found to have Immunology challenges such as IgG subclass deficiencies. Children will need to be evaluated for this issue by an immunologist. In addition, while there is good evidence of anti-neuronal antibodies in PANDAS, the diagnosis remain controversial primarily due to the observations by Johns Hopkins researchers who have not been able to detect such antibodies in their research subjects [Martono2007]. References [swedo1997] S Swedo et al, “Identification of Children With Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections by a Marker Associated With Rheumatic Fever”, Am J Psychiatry 154:1, January 1997 http://ajp.psychiatryonline.org/cgi/reprint/154/1/110.pdf [Kirvan2006] Kirvan CA, Swedo SE, Kurahara D, Cunningham MW, "Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea". 2006 Autoimmunity 39 (1): 21–9. http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf [swedo2004] Swedo SE, Leonard HL, Rapoport JL.” The pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS) subgroup: separating fact from fiction”, Pediatrics. 2004 Apr;113(4):907-11. http://pediatrics.aappublications.org/cgi/reprint/113/4/907 [Moretti2008] Moretti G, Pasquini M, Mandarelli G, Tarsitani L, Biondi M (2008). "What every psychiatrist should know about PANDAS: a review". Clin Pract Epidemol Ment Health 4: 13. http://www.ncbi.nlm.nih.gov/pmc/articles/P...5-0179-4-13.pdf [swedo1998] Swedo SE et al., “Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections: Clinical Description of the First 50 Cases”, Am J Psychiatry 155:2, February 1998. http://ajp.psychiatryonline.org/cgi/reprint/155/2/264 [Murphy2004] Murphy TK, Muhammad S, Soto O, et al. “Detecting pediatric autoimmune neuropsychiatric disorders associated with streptococcus in children with obsessive-compulsive disorder and tics”, Biological Psychiatry, Volume 55, Issue 1, Pages 61-68, January 2004 http://www.journals.elsevierhealth.com/per...0704-2/abstract [Pavone2006] Pavone P, Parano E, Rizzo R, Trifiletti RR (2006). "Autoimmune neuropsychiatric disorders associated with streptococcal infection: Sydenham chorea, PANDAS, and PANDAS variants". J Child Neurol 21 (9): 727-36. http://jcn.sagepub.com/cgi/content/abstract/21/9/727 [shet2003]Shet A, Kaplan EL, Johnson DR, Cleary PP, “Immune response to group A streptococcal C5a peptidase in children: implications for vaccine development”, J Infect Dis. 2003 Sep 15;188(6):809-17. http://www.journals.uchicago.edu/doi/pdf/10.1086/377700 [storch2006]Storch EA, Murphy TK, Geffken, G et al, “Cognitive-Behavioral Therapy for PANDAS-Related Obsessive-Compulsive Disorder: Findings From a Preliminary Waitlist Controlled Open Trial”, Journal of the American Academy of Child & Adolescent Psychiatry: October 2006 - Volume 45 - Issue 10 - pp 1171-1178 http://www.ncbi.nlm.nih.gov/pubmed/17003662 [Murphy2006]Murphy TK, Storch EA, Strawser MS, “Selective serotonin reuptake inhibitor-induce behavioral activation in the PANDAS subtype”, Primary Psychiatry, 2006;13(8):87-89, http://mbldownloads.com/0806PP_Murphy.pdf [Perlmutter1999]Perlmutter SJ, Leitman SF, Garvey MA, “Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood”, Lancet 1999; 354 : 1153 – 58 http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf [snider2005]Snider L, Lougee L, Slattery M, Grant P, Swedo S. "Antibiotic prophylaxis with azithromycin or penicillin for childhood-onset neuropsychiatric disorders". Biol Psychiatry 57 (7): 788–92. 2005 http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf [Nicolson2000]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 http://www.ncbi.nlm.nih.gov/pubmed/11026187 [Yaddanapudi2009] K Yaddanapudi, M Hornig, R Serge, J De Miranda, A Baghban, G Villar, W I Lipkin Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection Molecular Psychiatry August 11, 2009 doi:10.1038/mp.2009.77 http://www.nature.com/mp/journal/vaop/ncur.../mp200977a.html [schneider2002]Schneider R., Robinson M., Levenson J., “Psychiatric presentations of non-HIV infectious diseases: Neurocysticercosis, lyme disease, and pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection”, Psychiatric Clinics of North America, Volume 25, Issue 1, Pages 1-16 http://www.ncbi.nlm.nih.gov/pubmed/11912935 [Martono2007]Martono D, Church A, Giovannoni, G, “Are antibasal ganglia antibodies important and clinically useful?”, Practical Neurology, 2007; 7: 32-41 http://pn.bmj.com/content/7/1/32.extract

Faith, I guess I'm missing what you are arguing. In my case, we were thoroughly ill prepared for the severity of illness at 7 1/2 and it is only in retrospect (and studying the medical record) we can see other milder episodes. Perhaps for those who have severe tics rather than OCD, it is more clear, but, oh my goodness, there is nothing, nothing that would have prepared us for the "possession" and psychosis that happened in March 2008. I'm not disputing there might be something to vaccines -- it's possible a vaccine could cause inflammation of the BBB .... who knows. To some degree, I think we should just talk about this as PAND (a pediatric autoimmune neuropychiatric disorder). Then we can talk about causality. Lets get the disease recognized first and treatment covered and then get pathogensis done. Until we know more, I hope we can rejoice in each case on this forum of someone getting better because they've found something that works (be it antibiotics, pred, IVIG, PEX, ...). While Lauren's symptoms would be considered mild by a lot of the parents on this forum, it is really the perfect type of case to follow in the media -- it's not the raging and contamination fears that are so difficult to see and worse to experience. Buster

I don't think it matters. If anything IVIG will help close the BBB if it is open by being so anti-inflammatory. There really is unlikely to be any significant flow across the BBB. I do think that it's worth considering a pred-burst before IVIG... I have no great reason why except that it's the protocol that Dr. K uses and, well, seems to work. Can't give you a paper on it, but I think the antibiotics, then if that doesn't work, pred, then if that has effect, IVIG or PEX, then continued prophylaxis -- seems the right course.

Here's our time table (and I can send you a graph it it would help :-) ) OCD symptoms remitted 2 weeks after azith movement disorder/motor tremor remitted 4-6 weeks after azith vocal tic remitted 6-7 weeks after azith We were then stable for the summer. We have some other items that happened, but the general rule has been 4-6 weeks for any dramatic improvements. Buster