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Also, it does state that the research will involve antibody identification too. If you click on "Bench to Bedside" it states that Swedo, Leckman and Cunningham are those heading the research.

After I posted it, I started thinging of other things like if I should have asked if testing was done by Igenex. I give Buster so much respect for putting together those long surveys! I think the way you answer is it up to you. If you trust the results you have, mark negative. If you don't trust them and are going to have them done through Igenex, maybe mark that you are waiting on results?

No, it's not...but it's a start! I don't think anyone knows for sure when the name change and white paper will be released.

I don't do anything special to find these things out, guys. I just have google alerts turned on If you print it, make sure you print it from the website, not from here. That way you get the header saying the post is from the Director of the NIMH and you get the government logos at the end.

http://www.nimh.nih.gov/about/director/index-ocd.shtml August 13, 2010 Microbes and Mental Illness Posted by Thomas Insel Hints that some mental illness may be linked to infectious agents and/or autoimmune processes date back to at least the early 20th Century. In the 21st Century, the field of microbiomics, which is mapping the microbial environment of the human organism, may transform the way we think about human physical and mental development.1 It is already clear that 90% of “our DNA” is microbial, not human. “We” are, in fact, “super-organisms” made up of thousands of species, many of which are being identified for the first time. And there are persistent individual differences in our microbial ecology established early in life. Insights from microbiomics have proven important for understanding obesity2 and Type 1 diabetes,3 but microbiomics has not yet been a focus for research on mental illness. Yet, there are many clues linking microbiology and mental disorders, such as epidemiologic evidence of increased risk for schizophrenia associated with prenatal exposure to influenza. Probably the most compelling case for such involvement is children who develop obsessive compulsive disorder (OCD) and/or tic disorders “overnight,” following a strep infection. Despite continuing debate over its parameters, evidence is mounting in support of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) — or at least a syndrome modeled on it. Last month, the NIMH Pediatric Developmental Neuroscience Branch convened dozens of experts from the field — including prominent PANDAS critics — to update the science and attempt to achieve consensus on criteria defining the syndrome. The mere fact that the conference took place signals a change in the scientific climate. Until now, whether a child presenting with sudden onset of OCD and/or tic symptoms gets checked for possible involvement of strep has varied—often depending on which medical journals a practitioner happens to read. I am hopeful that will begin to change in light of the new evidence. Interest in PANDAS has also been spurred by an increasingly vocal network of affected families and the clinicians who are treating their often severely-impaired children. Conference participants heard reports from the front lines by some of these clinicians, who largely corroborated key features of the syndrome, originally identified by NIMH’s Dr. Susan Swedo in the mid-l990s. These include sudden onset of mood swings, impulsivity, anxiety, impaired attention and poor handwriting in addition to obsessions, compulsions and tics. Dr. Swedo’s studies have identified brain mechanisms through which strep antibodies act. They have also demonstrated that cleansing the blood of the antibodies, via plasma exchange or intravenous immunoglobulin, significantly diminishes the symptoms. Impetus for the July conference came, in part, from publication of two independent studies within the past year that lend new credence to the PANDAS concept. In the first, Columbia University researchers demonstrated, for the first time, that strep-triggered antibodies alone are necessary and sufficient to trigger a PANDAS-like syndrome in mice.4 In an autoimmune-disease susceptible strain of mice, exposure to strep triggered OCD-like repetitive behaviors and antibodies that attacked specific molecules in the brain. PANDAS-like behaviors also emerged in naïve mice after they received antibodies from such PANDAS mice. These included impaired learning and memory and social interaction. As in humans with PANDAS, these impairments were more common in males than females. In the second study, a Yale University research team reported that OCD and Tourette Syndrome (tic) symptoms worsened slightly following a strep infection in some affected children. Moreover, the strep infection triggered the worsened symptoms by increasing the impact of psycho-social stress.5 The findings suggest that a subset of children with these disorders may be at increased risk of strep infection, which could interact with stress to exacerbate the course, as is seen in other infectious and autoimmune diseases. Granted, these new findings are still preliminary and need to be replicated. However, the data relating to PANDAS is compelling enough to warrant following up such leads. NIMH is preparing to launch a new trial of intravenous immunoglobulin (IVIG) treatment for PANDAS this Fall, with support from a NIH Clinical Center “Bench to Bedside” award. The intramural NIMH will provide the clinical care, while data analysis will be carried out by independent teams of investigators at Yale University and the Oklahoma University Health Sciences Center. Dr. Swedo and her team are hoping to recruit 50 children with clear-cut PANDAS. They are predicting that IVIG treatment will produce striking benefits for OCD and other neuropsychiatric symptoms, and will be most effective for those children who start out with the highest levels of strep-triggered antibodies that go astray and attack parts of the brain. Moreover, monoclonal antibodies derived from these patients will be used to develop animal models of OCD that could lead to improved treatments. Do infectious agents influence the development of autism, anxiety, or mood disorders? This remains a frontier area for NIMH research. The increasing evidence linking strep infection to OCD in children suggests that microbiomics may prove an important research area for understanding and treating mental disorders. References 1Bacterial community variation in human body habitats across space and time. Costello EK, Lauber CL, Hamady M, Fierer N, Gordon JI, Knight R. Science. 2009 Dec 18;326(5960):1694-7. Epub 2009 Nov 5.PMID: 19892944 2A core gut microbiome in obese and lean twins. Turnbaugh PJ, Hamady M, Yatsunenko T, Cantarel BL, Duncan A, Ley RE, Sogin ML, Jones WJ, Roe BA, Affourtit JP, Egholm M, Henrissat B, Heath AC, Knight R, Gordon JI. Nature. 2009 Jan 22;457(7228):480-4. Epub 2008 Nov 30.PMID: 19043404 3Innate immunity and intestinal microbiota in the development of Type 1 diabetes. Wen L, Ley RE, Volchkov PY, Stranges PB, Avanesyan L, Stonebraker AC, Hu C, Wong FS, Szot GL, Bluestone JA, Gordon JI, Chervonsky AV. Nature. 2008 Oct 23;455(7216):1109-13. Epub 2008 Sep 21.PMID: 18806780 4Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection. Yaddanapudi K, Hornig M, Serge R, De Miranda J, Baghban A, Villar G, Lipkin WI. Mol Psychiatry. 2010 Jul;15(7):712-26. Epub 2009 Aug 11.PMID: 19668249. 5Streptococcal upper respiratory tract infections and psychosocial stress predict future tic and obsessive-compulsive symptom severity in children and adolescents with Tourette syndrome and obsessive-compulsive disorder. Lin H, Williams KA, Katsovich L, Findley DB, Grantz H, Lombroso PJ, King RA, Bessen DE, Johnson D, Kaplan EL, Landeros-Weisenberger A, Zhang H, Leckman JF. Biol Psychiatry. 2010 Apr 1;67(7):684-91. Epub 2009 Oct 14.PMID: 19833320.

Hasn't been said for awhile that Lyme would fall into the PITAND catagory, same as PANDAS. So, ultimately if your child is PANDAS, Lyme, etc....we all fall under the same bigger umbrella.

Hm. I look at the chart and what my SON had as his strongest symptoms falls into what the girls experienced strongest. For him, the exacerbations I referred to while taking the survey was when he was between just turning 5 until almost 6 years old. Could his age play a factor in it? Meaning, are hormone levels different in a 5 year old boy vs say a 9 year old boy? But, then, I cannot remember the average age of the boys in this survey.

I'm bumping this up for Saturday morning. Thank you for taking this!

Can we get a count for the number of Lyme kids and parents we have on here now. I'm having a deja vu when Mycoplamsa started to really surface on the board and I just can't keep track. If you have more than one child with Lyme, just post how many. Thank you!

This is the lab phone number 405-271-2133 ext47460 Otherwise, try this email... Kathy-Alvarez@ouhsc.edu

Wow. A lot of those people have sensory issues, maybe OCD, and they probably don't realize it.

Welcome. I can only imagine that it is a hard decision to make for antibiotics. One hand you see the leaky gut issues, the other hand you see the antibioics. The thing is if he has a hidden infection, he needs those antibiotics. We are also talking about more than an infection, but also a possible assault on his brain. Perhaps once things calm down you can go a more natural way, but you also have to look back at his life and see the struggles he has already faced then look at that antibiotic prescription you have sitting there and think to yourself "What if that script can help my son". Baby his gut in all other ways. Probiotics, lots of them, like EAMom said. Space them out from the antibiotics too so they are more effective. Your son is also 13, make him part of the decision. I think he'll tell you he wants to give the antibiotics a try. Being that you are in IN and rather close to Dr K, just do the drive and see him. Finally, here is a website your son may want to visit. It was created by a 13 year old boy with PANDAS. It's a good place that your son can talk to others. http://www.pandas-syndrome.webs.com/

Can you tell us what some of the "other" responses were? Were there any consistent write in answers that suprised you?

All 3 of them told you special ed? Really? Wow! And she had no behavior problems? maybe they need to be reminded that even if a child qualifies as needing special ed, they are suppose to try their best to keep them in the classroom with the rest of the kids. Maybe start researching for a district contact now. Were you able to speak to the super in private? I'm sorry you're having to deal with this ignorance. She has like 4 different teachers and this one is the only one who has said anything about it...and yea i am mad as heck too! the super, counselor and this teacher attacked me about it this morning. and thing is, its not like i asked them to do anything for her. I was there with her taking care of her if she needed me. i am so frustrated about this. i did home bound the entire last year with her, without a single piece of help from them and now this...ugh

You're working just as hard too I'm glad it sounds like you're seeing improvement. if you can, when those warning signs come on, just take a deep breath and leave the room if you can or mutter you have to do laundry and leave the room. The point is, if it's going to drive you up the wall, you don't want anything to slip and ever say anything you'll regret (even a "Come on!" can be read into so much by a child). It's best to just walk away for a few minutes.

I'm sorry she's doing worse Madeleine W. Cunningham, Ph.D. George Lynn Cross Research Professor Microbiology and Immunology Director, Immunology Training Program University of Oklahoma Health Sciences Center Biomedical Research Center Room 217 975 NE 10th Street Oklahoma City, OK 73104 Tel 405-271-3128 Lab 405-271-2133 X47455 FAX 405-271-2217 email: madeleine-cunningham@ouhsc.edu

Mandy, does your daughter have different teachers for each class? If that teacher is going to have such an attitude, perhaps it is best to try to switch that teacher...and then report her. If you are strong and you fight it, I don't think they will "win" and put her in special ed. Special ed isn't for a med issue like this. The more I think about it, the more mad I get!

I'm glad to hear things are going well! May you and your family be blessed with happiness and health.

I'm sorry you're going through this. Two weeks seems like a lifetime when dealing with this. Do you know if strep was the culprit? Since he's been off antibiotics for 3 weeks, take him to the doctor and have him tested. It sounds like he needs those antibiotics. Perhaps if the doctor sees him in person, sees the terror in your eyes, he will do something. And you're not a bad parent for thinking what you are. You feel shell shocked when this happens. Even when your child begins to re-emerge, you still have so many feelings in you. Many describe it as Post Traumatic Stress Disorder. When my son was sick, he was gone. That wasn't him. Keep fighting and find inner strength. Believe and know you will get him back.

Welcome. Low titers does not mean strep wasn't present. Also, a lot of kids on here will start to react to viruses, allergies and even mere exposure to strep so what you are now seeing isn't uncommon. It is also a reason to rule out strep in every family member, even if no symptoms are present. As for a doctor, here is a doctor list http://www.latitudes.org/forums/index.php?showtopic=6428 btw..there are others from Plano area on here. If you search "Plano" some threads will pop up like this one http://www.latitudes.org/forums/index.php?showtopic=8318&st=0&p=68610&hl=plano&fromsearch=1entry68610

I read his facebook page. He doesn't "do" PANDAS probably because, like Kayanne said, you need antibiotics and he doesn't want to endorse antibiotic use. I'm the lone one that will comment....if you have an infection, put your child on an antibiotic. However...when I do reference PANDAS/PITAND to a status update of his, I usually get a couple "likes" from fans. So, there are people out there who would want to learn more!

Glad to hear things are going well! I have read LDN is good for Rheumatoid Arthritis as well. Mercola strongly suggests it for RA.I've posted questions for him about PANDAS/PITAND before and they either get deleted or avoided...

No, it was not the only symptom in a strep triggered exacerbation. I think when he had a virus, he wets his bed, but that would be at max 3 days of bedwetting. This number of days is pretty consistent. When he wets his bed, I prepare myself for changing sheets 3 nights in a row. Also, when it's viruses, his PANDAS symptoms would surface,but minor. Minor to the point that someone who wasn't his Mom may not have questioned them, but I saw them.

My son went to the bathroom a lot in his first exacerbation, but I do not think it was due to the urge to urinate. He had compulsive hand washing and he knew he was "allowed" to wash his hands if he used the bathroom. It wasn't until his third exacerbation did we notice urination problems. He wet his bed nightly for over a month. Then, one day it just stopped.

If the name is linked by to SC, would they somehow twist it so my son does not fit the critera since he had no movement problems and no tics or would a regular peditrician dismiss him? Because of that,I prefer the comparison to RF.