IVIG Study Needs Participants - act quickly

A Placebo-Controlled Trial of Intravenous Immunoglobulin (IVIG) for PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) <a href="http://pandasnetwork.org/2011/12/ivig-study-needs-participants-asap/">http://pandasnetwork.org/2011/12/ivig-study-needs-participants-asap/</a> IVIG is a large component of PANDAS recovery for many welcoming some kids back to full function, to joyful lives. If nothing else follow this study for outcomes. What is the OCD piece of PANDAS and what is the key to taking it down? We'll be watching this NIH study.
12/4/2011 6:16:15 AM
(emst)

Why was the second-grader suddenly overwhelmed with anxiety and obsessions?

Attached to this P.A.N.D.A.S. group discussion is an article published in the Washington Post Health and Science section. Tuesday, September 27, 2011. Thought the group would find it interesting ...
9/28/2011 9:39:26 AM
(gdt)

Microbes and Mental Illness

<a href="http:// http://www.nimh.nih.gov/about/director/index-ocd.shtml"> http://www.nimh.nih.gov/about/director/index-ocd.shtml</a>   <h1 id="title"> Director’s Posts about Obsessive-Compulsive Disorder (OCD)</h1> <h2> On This Page…</h2> <ul> <li> <a href="http://www.nimh.nih.gov/about/director/index-ocd.shtml#p98381">Microbes and Mental Illness</a> (August 13, 2010)</li> </ul> August 13, 2010 <h2 class="post-title"> <a href="http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml">Microbes and Mental Illness</a></h2> Posted by <a href="http://www.nimh.nih.gov/about/director/directors-biography.shtml">Thomas Insel</a> 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 <a href="http://www.nimh.nih.gov/health/topics/schizophrenia/index.shtml">schizophrenia</a> associated with <a href="http://www.projectreporter.nih.gov/project_info_description.cfm?aid=7810634&icde=4800813">prenatal exposure to influenza</a>. Probably the most compelling case for such involvement is children who develop <a href="http://www.nimh.nih.gov/health/topics/obsessive-compulsive-disorder-ocd/index.shtml">obsessive compulsive disorder (OCD)</a> and/or tic disorders “overnight,” following a strep infection. Despite continuing debate over its parameters, evidence is mounting in support of <a href="http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions-about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal-infections.shtml">Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS)</a> — or at least a syndrome modeled on it. Last month, the <a href="http://intramural.nimh.nih.gov/pdn/">NIMH Pediatric Developmental Neuroscience Branch</a> 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
8/31/2011 5:16:16 AM
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Can Your Child Catch a Mental Illness?

Story Published: Jul 22, 2011 at 9:25 AM PDT - http://www.katu.com/amnw/segments/126016898.html Have you ever heard of PANDAS? When Beth Maloney’s middle son Sammy was 12, he was diagnosed with Obsessive Compulsive Disorder and then Tourette Syndrome. Confined to their home by the horror of his illness, a lifelong placement seemed his likely fate -- until Beth learned that a strep infection might be the cause (a disorder known as PANDAS). Most doctors said she was wrong but she followed her mother’s instincts and now her son Sammy is fully recovered. Beth joined us to share her story detailed in her book, Saving Sammy-- A Mother's Fight to Cure Her Son's OCD. Children affected by PANDAS can have any combination of the following symptoms: - Cognitive inflexibility, difficult to reason with, as if stuck on an idea, - Obsessive/repetitive/compulsive argumentative behaviors, - TICS (repetitive vocalizations of body movements), - Tourette Syndrome, - Attention deficits and oppositional/defiant behaviors - Eating disorders For more information on PANDAS, click here. http://www.internationalpandasfoundation.org For more information on Beth and her book, visit her website. http://www.savingsammy.net
8/15/2011 12:56:27 PM
(gdt)

BOOKMARK THIS: Trove of PANDAS facebook pages, groups, websites and videos

Wow what a difference in the last couple of years. This is a post to save. Look at the kids with PANDAS running their own websites, incredible! IMO they will be the key to understanding this condition as they recover and grow. We're finding as our dd recovers and matures she is able to articulate and even anticipate symptoms - we're better able to nip them in the bud. Would that the whole world operated this way. There is such a big part of me as a parent that wishes she could just forget it all - don't we all. At the same time I'm proud that she is aware, willing to help and blessedly not raging at PANDAS. Props to PANDAS facebook pages, groups, websites and videos by Spreading awareness of Pandas to the Mid West on Thursday, August 4, 2011 at 9:33pm FACEBOOK PAGES Spreading awareness of Pandas to the Mid West - http://www.facebook.com/pages/Spreading-awareness-of-Pandas-to-the-Mid-West/247008621995244 Beth Alison Maloney - http://www.facebook.com/pages/Beth-Alison-Maloney/233696275037?ref=pb Saving Sammy: Curing the Boy Who Caught OCD - http://www.facebook.com/pages/Saving-Sammy-Curing-the-Boy-Who-Caught-OCD/104887432702?ref=pb PANDAS Foundation - http://www.causes.com/causes/376853?ref=pb P.A.N.D.A.S. Network - http://www.facebook.com/pandasnetwork?ref=pb P.A.N.D.A.S Resource Network - http://www.facebook.com/pages/PANDAS-Resource-Network/184731978233686?ref=pb The Latimer P.A.N.D.A.S Group -http://www.facebook.com/pages/The-Latimer-PANDAS-Group/185378388178803?ref=pb P.A.N.D.A.S. - P.I.T.A.N.D. (P.A.N.S.) Awareness Ribbon & Research Support -http://www.facebook.com/pages/PANDAS-PITAND-PANS-Awareness-Ribbon-Research-Support/104784939604627?ref=pb Pepsi Refresh Project P.A.N.D.A.S. -http://www.facebook.com/ProjectPANDAS?ref=pb P.A.N.D.A.S Autoimmune Disease Find a cure - http://www.facebook.com/pages/PANDAS-Autoimmune-Disease-Find-a-cure/193646440654997?ref=pb My Body, My Enemy: The Lives of People with Autoimmune Disease - http://www.facebook.com/mybodymyenemy?ref=pb PANDAS - http://www.facebook.com/pages/PANDAS/132332230138310?ref=pb FACEBOOK GROUPS "Parents"of Kids with PANDAS/PITAND/PANS -Private Group;Intro Docs on Right- http://www.facebook.com/groups/134746729910966/ Kids with PANDAS/PITAND - http://www.facebook.com/groups/148976378501582/ P.A.N.D.A.S./P.I.T.A.N.D./P.A.N.S. INTERNATIONAL - http://www.facebook.com/groups/209188422425603/ PANDAS -Pediatric Autoimmune Neuropsychiatric Disease Associated with Strep - http://www.facebook.com/groups/110031982380409/ PANDAS Resource Network - http://www.facebook.com/groups/110603062314494/ P.A.N.D.A.S. Awareness - http://www.facebook.com/group.php?gid=127710290606544 ThinkPANDAS- http://www.facebook.com/group.php?gid=353556961539 Supporters of children with P.A.N.D.A.S - http://www.facebook.com/group.php?gid=123627147654483 Promote awareness of PANDAS, caused by Strep throat! - http://www.facebook.com/group.php?gid=163792804077   WEBSITES http://www.microgiving.com/profile/vablavat http://savingsammy.net/ http://www.internationalpandasfoundation.org/obsessivecompulsivedisorder/Home.html http://pandasnetwork.org/ http://pandasresourcenetwork.org/ http://www.pandas-pitandawareness.org/ http://www.pandas-pitandawareness.org/Downloads.php http://www.picbadges.com/streppandas/2098589/?fb_ref=social_bar&fb_source=profile_oneline (spreading the awareness pic bage) http://www.picbadges.com/pandas-pitand-awareness-ribbon/1703237/ (pandas-pitand ribbon pic bage) http://www.picbadges.com/pandas-awareness/1768432/ (pandas awareness pic bage) http://www.picbadges.com/i-support-pandas-research/230839/ (
8/14/2011 7:05:51 AM
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Are you and your child ready for Back to School?

Seems crazy asking the question: Are you and your child ready for Back to School? Our school year just wrapped this morning. Summer is generally a time to regroup and stand down from the high alert of the strep season that just ended but consider this over the next few days and weeks: what happened? What were the low points? It's helpful if you have these ideas written down. How long do PANDAS exacerbations last? What is your usual course of treatment? What accommodations helped - and what did not. Did your child miss days of school due to PANDAS? Did your child regress in math or handwriting? How would you characterize anxiety as it cycled from good to bad to worse and slowly back again. What helped with anxiety? Wait and see, hope against hope and playing it by ear are not PANDAS strategies. Next to healing, preparation is the best position for a crisis should a crisis arrive next school year. It is helpful to have these challenges documented and aligned with meaningful educational goals in your child's IEP or 504 plan. What does aligned with educational goals mean? On the ground it means that if your child misses school days you may need to ask that work be prepared to be sent home, if that helps. It may also mean that assignments will be modified. Have that written in to your IEP. Math regression? Have a goal written that says math must be tested and re-taught as needed. Hand-writing regression? Teach keyboarding in the summer and have it added to the IEP for the school year as an accommodation. Handwriting issues can also be addressed by having a parent or teacher scribe, or write down the words the child dictates which works especially well for composing essays. Anxiety? Sensory problems? One of our kids needs modified gym; she cannot function in the noise. Call a meeting with your district. Put all these supports in place now while the preceding years troubles are still fresh in your mind and you'll be in a strong position going in to the fall. Of course part of me will still hope that you won't need any of these accommodations but that's not a strategy, right? For other resources check in with PANDAS Resource Network:   <a href="http://pandasnetwork.org/resources-new-research/for-the-school/">http://pandasnetwork.org/resources-new-research/for-the-school/</a>
6/24/2011 4:41:49 PM
(emst)

Of course this book is a slog - PANDAS

Just finishing Out of the Fog - Into the Light on my Kindle, <a href="http://www.amazon.com/Out-Fog-Into-Light-ebook/dp/B004KAAYIO/ref=sr_1_2?ie=UTF8&qid=1312987772&sr=8-2">http://www.amazon.com/Out-Fog-Into-Light-ebook/dp/B004KAAYIO/ref=sr_1_2?ie=UTF8&qid=1312987772&sr=8-2</a> Also bouncing through my head is a note from my mom the other day that she's caught a rerun of Mystery Diagnosis the Boy who only Hopped <a href="http://health.discovery.com/fansites/mystery-diagnosis/diseases-10.html">http://health.discovery.com/fansites/mystery-diagnosis/diseases-10.html</a>   Mom said that the story unfolded a bit slowly. My immediate thought was well, yeah, that's because it takes 4 years to get a diagnosis but I did not zing that back in an e-mail. Like Saving Sammy  <a href="http://www.amazon.com/Saving-Sammy-Curing-Boy-Caught/dp/0307461831/ref=sr_1_1?ie=UTF8&qid=1312988475&sr=8-1">http://www.amazon.com/Saving-Sammy-Curing-Boy-Caught/dp/0307461831/ref=sr_1_1?ie=UTF8&qid=1312988475&sr=8-1</a> Out of the Fog - Into the Light is tedious in the unfolding drama unless you're a PANDAS parent in which case it's a page turner. Set in the late 90s author Elizabeth Ann Eberhardt who shares the byline with her husband and son, brings readers through every crazy at-home ritual, every mile driven on their trips out of state, every phone consult, celebrating each success, and sinking in each set-back. We all know this terrain but wow unless you've taken those road crazy trips, sat in on those deadening consults, how does anyone unaffected relate? Won't spoil it, it ends differently than Saving Sammy though both boys are recovering. Worth reading.
8/10/2011 11:29:17 AM
(emst)

Annotation: PANDAS: a model for human autoimmune disease

<a href="http://intramural.nimh.nih.gov/pdn/pubs/pub-13.pdf">http://intramural.nimh.nih.gov/pdn/pubs/pub-13.pdf</a>
8/13/2010 8:21:26 PM
(emst)

OCD, PANDAS, Pediatrician and You

Chicken or Egg? PANDAS and OCD, OCD and PANDAS? Depends, doesn't it. Tanya Murphy M.D., MS, gives us the best new article I've seen chock full of constructive suggestions in a quick read posted on the International OCD Foundation website. Constructive? How often do we see that along-side PANDAS? Alas, it not all rosy. It's worded fairly carefully. The article allows for considering other diagnosis of mental illness and viral illness. While neither unexpected or inappropriate read it with the knowledge that too many PANDAS families are dragged down what turns out to be the wrong path by physicians following a maxim that dictates looking at the most common illness first, precious time lost. Take away action-words for articulating PANDAS symptoms, embrace them: Dramatic, Out of Character Loss of Skills, Pattern of Behavior, Episodic. <a href="http://www.ocfoundation.org/ocdinkids/ocd_in_kids_parents.aspx?id=2042&terms=pandas">http://www.ocfoundation.org/ocdinkids/ocd_in_kids_parents.aspx?id=2042&terms=pandas</a>
7/9/2011 8:47:09 AM
(emst)

Struggling with S. Thermophilus (me)

What do you do when all the literature points in one direction, your well known DAN doctor is pointing in that same direction, and almost every day you're reading parent reports of PANDAS kids reacting to this strain of strep. Alright, I had to see it for myself. August 2009 they'd been doing well on Klaire Therbiotic Detox Support. It was then and is still now our favorite probiotic. It was strongly recommended by our homeopath after I brought my questions and confusion to her office. <a href="http://www.klaire.com/prod/proddetail.asp?id=V770-06">http://www.klaire.com/prod/proddetail.asp?id=V770-06</a> But also on the Klaire website have saved this article for the past few years <a href="http://www.klaire.com/images/PANDAS.pdf">http://www.klaire.com/images/PANDAS.pdf</a> they say the S. Thermophilus association is unfounded. We tried VSL#3 Capsules for 8 days, a little die off could be expected for a few days but they were not well, anxious, stressed out, one was screechy and then went back to Klaire Therbiotic Detox for a couple weeks. After explaining this to our doctor she still suggested we needed the S. Thermophilus maybe VSL#3 just wasn't for us. We tried Klaire Therbiotic Complete (contains S. Thermophilus) another bad scene. Wiped out, weepy, complaining, not sleeping. Tried charcoal to control any die off - that can happen when changing probiotics. Didn't really help. One more try. Tried Threelac, similar story. So maybe I'm dim, try not to flame me.  Just wondering where's the research? Going to check in with some parents. Thanks. Struggling with S. Thermophilus (me)  
7/3/2011 1:14:55 PM
(emst)

Thank goodness for Yahoo Groups PANDAS posts

Really. I mean it. Thank goodness for Yahoo Groups PANDAS and other posts.  I am today, as I have been on many days in the last 5-6 years struck, wondering where I would be without these other parents who posted so much for so long on Pandas, Lyme, Autism? I'd be up a creek, no doubt. Just came upon a thick folder of articles I'd printed out about PANDAS, and other issues over the last few year with the best intentions of internalizing this information. I'll be posting 2 more articles with comments later this morning but first a big shout out to those who give so much of their time and intellect to helping other parents. Here are the resources. Pay it forward. Yahoo Group: pandas_autism Yahoo Group: taca-usa Yahoo Group: mb12valtrex Yahoo Group: abmd Yahoo Group: BorreliaMultipleInfectionsAndAutism <a href="http://groups.yahoo.com/">http://groups.yahoo.com/</a> Another well deserved nod to ACN Forums:<a href="http://www.latitudes.org/forums/index.php?s=c65037ba950d180d5152ff7828a39b2c&showforum=17"> http://www.latitudes.org/forums/index.php?s=c65037ba950d180d5152ff7828a39b2c&showforum=17 </a>  
7/3/2011 10:12:35 AM
(emst)

Brain, behavior may suffer after infection

Donya Currie does an incredible job with this article giving the subject both weight and balance. Pointing to a list of symptoms up front is a great attention getter sure but more important it is a great service to parents seeking diagnosis illuminating well the challenges involved in diagnosis. She doesn't let the nay sayers off the hook, here's her article. Kudos. Comments? http://fredericksburg.com/News/FLS/2011/062011/06062011/1307374899fls/printer_friendly <a href="http://fredericksburg.com/News/FLS/2011/062011/06062011/1307374899fls">http://fredericksburg.com/News/FLS/2011/062011/06062011/1307374899fls</a>
6/7/2011 4:52:04 PM
(emst)

A 7 year Old Boy with ADHD -- and PANDAS

From a section in the medical journal Psychiatric Annals Online they call 'Case Challenges' comes an interesting report on a case involving a 7 year old boy with ADHD and the steps that lead this family and their physician to an additional diagnosis of PANDAS. Considering the number of times we have met with blank stares or outright hostility at the mention of PANDAS in the ongoing effort to have our children treated for their illness I find stories like this somewhat heartening. Thought: Book mark this article in case you need to refer to it in a psychiatric or emergency treatment situation <a href="http://www.psychiatricannalsonline.com/view.asp?rid=83455">http://www.psychiatricannalsonline.com/view.asp?rid=83455</a>
6/5/2011 4:01:09 PM
(emst)

Will PANDAS name change to PANS in the future?

Will PANDAS name change to PANS in the future? At the Autism One conference in the Chicago area last weekend in Dr. M. Cunningham's presentation on Sunday 5/29/11 she indicated that the name of the disease will probably change to PANS -- or is it P.A.N.S. (Pediatric Acute Neurologic Syndrome.) The new definition seeks to account for exacerbations triggered by exposure to strep, mycoplasma, lyme and virus(es.) PANDAS docs are testing for Lyme as a matter of routine these days, what does this mean? Watch on-line at: <a href="http://pandasnetwor k.org/2011/ 05/pandas- and-autoimmunity -summary- of-dr-cunningham s-autismone- presentation/">http://pandasnetwor k.org/2011/ 05/pandas- and-autoimmunity -summary- of-dr-cunningham s-autismone- presentation/</a>  
6/1/2011 4:39:39 PM
(emst)

WATCH Madeleine Cunningham, PhD -- STREAMING LIVE AutismOne Conference Sunday

This Sunday May 27, 2011 9:00 a.m. to 10:a.m. (Central time) PANDAS and Autoimmunity Madeleine Cunningham, PhD -- STREAMING LIVE from the AutismOne Conference Dr. Cunningham has published and co authored a number of  journal articles in relation to her blood assays and their pronounced correlation with the PANDAS population as well as with patients with Sydenham's Chorea. The data show elevated anti-neuronal antibody titers now turning out to be more highly reliable indicators sending the standard ASO and Anti-DNase B titer tests to the back seat. CamKinase II levels are especially helpful as a diagnostic confirmation. Cam Kinase II is an enzyme critical to neurotransmitter function in the brain. This type of testing shows much higher CamKinase levels for PANDAS kids than in other cases where OCD, Tics, Tourettes, ADHD occur or in non symptomatic populations. WATCH Live on USTREAM.TV Sunday May 27, 2011 9:00 a.m. to 10:a.m. (Central time) <conference a="" href="http://www.autismone.org/content/autismonegeneration-rescue-2011-conference">http://www.autismone.org/content/autismonegeneration-rescue-2011-conference></conference>  
5/26/2011 8:10:27 PM
(emst)

Power Failure Does mitochondrial dysfunction lie at the heart of common, complex diseases like cancer and autism?

Mitochondrial dysfunction is thought to play a part in PANDAS too, question is it cause or effect. Here is a link to an article on the subject : Power Failure <a href="http://www.the- scientist. com/article/ display/58132/">http://www.the- scientist. com/article/ display/58132/</a>
5/24/2011 1:58:22 PM
(emst)

Journal Article: Berberine Sulfate Blocks Adherence of Streptococcus pyogenes to Epithelial Cells, Fibronectin, and Hexadecane

<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC175870/pdf/aac00088-0100.pdf">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC175870/pdf/aac00088-0100.pdf</a>
5/19/2011 2:00:56 PM
(emst)

New Book about PANDAS: Outof the fog, in to the light - e book

<a href="http://www.amazon.com/Out-Fog-Into-Light-ebook/dp/B004KAAYIO/ref=sr_1_1?s=books&ie=UTF8&qid=1305623640&sr=1-1">http://www.amazon.com/Out-Fog-Into-Light-ebook/dp/B004KAAYIO/ref=sr_1_1?s=books&ie=UTF8&qid=1305623640&sr=1-1</a> I'll try to get through this quickly and post a review.
5/17/2011 5:18:47 AM
(emst)

talkAbout index

Tab Events

IVIG Study Needs Participants - act quickly

Why was the second-grader suddenly overwhelmed with anxiety and obsessions?

Microbes and Mental Illness

Can Your Child Catch a Mental Illness?

BOOKMARK THIS: Trove of PANDAS facebook pages, groups, websites and videos

Are you and your child ready for Back to School?

Of course this book is a slog - PANDAS

Annotation: PANDAS: a model for human autoimmune disease

OCD, PANDAS, Pediatrician and You

Struggling with S. Thermophilus (me)

Thank goodness for Yahoo Groups PANDAS posts

Brain, behavior may suffer after infection

A 7 year Old Boy with ADHD -- and PANDAS

Will PANDAS name change to PANS in the future?

WATCH Madeleine Cunningham, PhD -- STREAMING LIVE AutismOne Conference Sunday

Power Failure Does mitochondrial dysfunction lie at the heart of common, complex diseases like cancer and autism?

Journal Article: Berberine Sulfate Blocks Adherence of Streptococcus pyogenes to Epithelial Cells, Fibronectin, and Hexadecane

New Book about PANDAS: Outof the fog, in to the light - e book

Hudson Valley Parent - vax + autism

PANDAS syndrome in the School Setting ARTICLE

Link to Cunningham test

How Strep Attacked my Child's Brain

NIMH post July 2010

Perlmutter study in the 1999 Lancet

Post Strep

Toll Like Receptors

Use of IVIG for Hematologic and Neurologic Conditions

P.A.N.D.A.S. Resource Network

A Mysterious Connection Between Strep and OCD

PANDAS, Autism Spectrum Disorders and Involvement of Streptococcus Organisms