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theherd - THE HERD November 2020~ 2nd edition

Don’t Be Left Behind. Keep Up With THE HERD!

Selected Highlighted News in the field of Autoimmune

Encephalitis November 2020 2nd edition

In this Issue~

* Announcements: National Family Caregiver Month, Honoring Wendy Station,  AE Warrior Store
*Children’s Corner: Understanding parental perspectives on outcomes following pediatric encephalitis, Thanksgiving Word Scramble Puzzles 
*Most Popular Visual of the Month: Therapeutic treatments for anti-NMDAr & Symptomatic Management, Diagnostic Clues of anti-NMDAr, Stop. Someone in this house has a Weak Immune System poster
*COVID-19’s Impact on the AE Community: What is ‘Long COVID’, Video: I Wear A Mask because Prevalence of Asymptomatic SARS-CoV-2 Infection
*Most Popular Download: The Cat in The Hat on Autoimmune Encephalitis
*Featured AE Articles: Efficacy and Safety of Rituximab in Autoimmune Encephalitis: A Meta-Analysis, The Clinical Features, and Prognosis of Anti-NMDAR Encephalitis Depends on Blood-Brain Barrier Integrity
*Clinician’s Corner: Imaging Review of Paraneoplastic Neurologic Syndromes
*COVID-19 Clinician’s Corner: Anti–SARS-CoV-2 antibodies in the CSF, blood-brain barrier dysfunction, and neurological outcome
*Open Access: Autoimmune encephalitis as a differential diagnosis of schizophreniform psychosis: clinical symptomatology, pathophysiology, diagnostic approach, and therapeutic considerations



National Family Caregiver Month – November 2020

Do you have a caregiver in your life who has devoted themselves to seeing that your best interests are their top priority? Many of us are only alive today because of that special person who loves us so much, they were there when we could not take care of ourselves.

If you have someone in your life, I hope you honor them with this certificate (or one of the other options on the ‘AE Warrior Gifts’ page on the IAES website), as a way of expressing you know how hard their sacrifices are!
(The Candy bar wrappers are a free download, Certificates $5, Survival kits $3)


A Celebration of Life for Wendy Station Saturday, Nov. 21st at 11a PST/1p CST/2p EST.

After surviving a 1999 diagnosis of a serious and rare brain condition known as encephalitis, Wendy made it her life’s work to offer support and care to others touched by the disease. In addition to organizing global conferences and an online care group, Wendy had testified before the US Congress and the Canadian Parliament. Her registered charity reached 7000 people in over 90 countries around the world.

Wendy has been a dear friend to IAES over the years and a tremendous advocate in the encephalitis community. She will be deeply missed. 

Raise Awareness by Shopping at the AE Warrior Store


Visit our AE Warrior store to see a variety of products designed to raise AE awareness and support research. 

The proceeds from your purchase will immediately support autoimmune encephalitis patients, caregivers, and families who are walking this difficult journey. 


Children’s Corner 

Understanding parental perspectives on outcomes following pediatric encephalitis: A qualitative study

Encephalitis, characterized as inflammation of the brain tissue is an important cause of acquired brain injury in children. Objective clinical outcomes vary significantly between affected patients; however, they do not always correlate with the quality of life as reported by parents. The aim of this study was to explore how parents experience and interpret outcomes in relation to their child who has been affected by encephalitis.


Parents’ perspectives on important outcomes for their child and family changed during the different stages of the encephalitis illness trajectory: from acute illness, recovery and rehabilitation, then reintegration into everyday life. Parents’ understanding of their children’s overall outcome was informed by their own experiences, involving comparisons with other children and reflections on their child’s problems before, during, and after the acute illness.


Outcomes in pediatric encephalitis need to be understood in terms of the context of the patient and family experience as well as the timeframe of recovery. The research highlights the need to include more patient, parent, and/or career reported outcome measures during the patient assessment, and that assessment should be repeated during recovery as family concerns change. In the longer term, these parameters could be included in clinical and rehabilitation practice to further support child recovery.

Thanksgiving Word Scramble puzzles for Cognitive Exercise and Rehabilitation

Thanksgiving Word Scramble-1

Word Scramble puzzles are a wonderful exercise to do for brain injury rehabilitation from AE. These word scramble worksheets are a great activity to help your kids develop their problem solving and analytical skills. These Thanksgiving word scramble worksheets feature Thanksgiving words to unscramble and a picture to color. The word scramble is printable, and the scrambled words change each time you visit this site. The word list is also provided at the bottom of each worksheet so that you can check your answers.

The ones offered here range from easy>medium level of difficulty>hard>super hard.

 Choose other fun and educational activities to keep your kids busy.  Coloring pages connect the dots, crafts, crossword puzzles, maze worksheets, pattern worksheets, story starters, sudoku puzzles, word decoders, and word scrambles are all here for your children to try while working on rehabilitation from a brain injury caused by their AE.

Most Popular Download

Therapeutic treatments for anti-NMDAr & Symptomatic Management

propsed treatment and dose for anti-NMDAR encephalitis

Diagnostic Clues of anti-NMDAr AE

diagnostic clues of anti-NMDAR encephalitis

Poster: Stop Someone in This House Has a Weak Immune System


COVID-19’s impact on the AE Community

What is ‘Long COVID’ and what parts of the body does it affect?s


This review highlights the detrimental physical and psychological impact that ongoing COVID is having on many people’s lives.

  • So-called ‘long COVID’ might actually be four different syndromes, doctors say.
  • While the illness starts in the respiratory system, symptoms can fluctuate around the brain, cardiovascular system and heart, the kidneys, the gut, the liver and the skin.
  • It’s vital both doctors and patients continue to report these symptoms, so medical researchers can better understand COVID-19.

Ongoing illness after infection with COVID-19, sometimes called “long COVID”, may not be one syndrome but possibly up to four causing a rollercoaster of symptoms affecting all parts of the body and mind.

Medical group says ‘hundreds of thousands’ of COVID-19 deaths possible if ‘nation does not change its course’ 

Your cloth face covering may protect them. Their cloth face covering may protect you

CDC staff give their reasons for wearing a mask. Stop the Spread. Keep yourself healthy and your family, community and loved ones healthy. 

Prevalence of Asymptomatic SARS-CoV-2 Infection

Important information regarding COVID-19 and how easily it is spread. Please take precautions CDC and WHO recommend.

Key Summary Points

The likelihood that approximately 40% to 45% of those infected with SARS-CoV-2 will remain asymptomatic suggests that the virus might have greater potential than previously estimated to spread silently and deeply through human populations.

Asymptomatic persons can transmit SARS-CoV-2 to others for an extended period, perhaps longer than 14 days.

The absence of COVID-19 symptoms in persons infected with SARS-CoV-2 might not necessarily imply an absence of harm. More research is needed to determine the significance of subclinical lung changes visible on computed tomography scans.

The focus of testing programs for SARS-CoV-2 should be substantially broadened to include persons who do not have symptoms of COVID-19.

Most Popular Visual~







The Cat in The Hat on Autoimmune Encephalitis

cat in hat

Featured AE Articles~

Efficacy and Safety of Rituximab in Autoimmune Encephalitis: A Meta-Analysis

Results: Good functional outcome at last follow-up following rituximab therapy occurred in 72.2% of patients (95% CI: 66.3%-77.4%). Mean mRS score decreased by 2.67 (95% CI: 2.04-3.3; p <0.001). Relapses following the rituximab therapy occurred in only 14.2% of patients (95% CI: 9.5%-20.8%). Infusion-related reactions, pneumonia, and severe sepsis were seen in 29 (15.7%), 11 (6.0%) and 2 patients (1.1%) respectively. The efficacy and side effect profile of rituximab is comparable to outcomes seen in rituximab use in other autoimmune and inflammatory CNS disease.

Conclusion: Our meta-analysis showed that rituximab is an effective second line agent for AE with an acceptable toxicity profile.

The Clinical Features and Prognosis of Anti-NMDAR Encephalitis Depends on Blood-Brain Barrier Integrity


Decreased consciousness, ICU admission, a higher Neutrophil-to-lymphocyte ratio (NLR), and CSF protein are related to the integrity of the BBB in anti-NMDAR encephalitis patients.

In anti-NMDAR encephalitis patients, albumin/serum albumin (QAlb) increased was positively correlated with the quantitative intrathecal IgG synthesis.

The dysfunction of BBB can be helpful in evaluating anti-NMDAR encephalitis patients’ prognosis.

Clinician’s Corner

Imaging Review of Paraneoplastic Neurologic Syndromes

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Paraneoplastic neurologic syndromes can cause a wide range of imaging abnormalities throughout the central and peripheral nervous systems. We have described the imaging findings of paraneoplastic limbic encephalitis, cerebellar degeneration, brain stem encephalitis, cranial neuropathy, myelitis, and polyneuropathy. Additionally, we have highlighted the fact that these entities can have variable imaging findings resulting in many potential diagnostic pitfalls. Because imaging features of each entity are sometimes nonspecific, consideration of paraneoplastic syndromes based on imaging findings combined with a review of patient history is important. Although serum and CSF paraneoplastic antibody positivity can be helpful, they may be absent, as illustrated in many of our cases. Importantly, many of these syndromes respond to the treatment of underlying malignancy or immunotherapy. Therefore, timely diagnosis is likely to significantly impact patient outcomes. Last, it should be noted that PNSs are relatively rare disorders compared with various conditions in the differential diagnosis. The diagnosis of PNS often requires the exclusion of these more common entities.

woman in pain wearing mask covid

COVID-19 Clinician’s Corner

Anti–SARS-CoV-2 antibodies in the CSF, blood-brain barrier dysfunction, and neurological outcome


Conclusions:  High-titer anti-SARS-CoV-2 antibodies were detected in the CSF of comatose or encephalopathic patients demonstrating intrathecal IgG synthesis or BBB disruption. A disrupted BBB may facilitate the entry of cytokines and inflammatory mediators into the CNS enhancing neuroinflammation and neurodegeneration. The observations highlight the need for prospective CSF studies to determine the pathogenic role of anti–SARS-CoV-2 antibodies and identify early therapeutic interventions.

image 15 - THE HERD November 2020~ 2nd edition

Autoimmune encephalitis as a differential diagnosis of schizophreniform psychosis: clinical symptomatology, pathophysiology, diagnostic approach, and therapeutic considerations



The awareness of the fact that psychotic syndromes may have autoimmune, Ab-associated causes opens up a new field in psychiatry for a small but probable relevant subgroup of patients. For clinicians, this raises the question as to how far the diagnostic workup and immunomodulating therapy attempts should be advanced in individual cases. This article investigates this question by illustrating constellations in which extended organic diagnostic procedures, especially Ab analyses, should be carried out.

Reviews Red Flags, the syndrome of possible autoimmune encephalitis, Diagnostic approach: Taking Extended history, Medical and neurological physical examination, Neuropsychological testing, Laboratory measurements, EEG, Imaging, tumor screening.

AE Trivia Playing Cards

The perfect companion for patients, Caregivers & Therapist

Created by IAES and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE).  This deck answers 52 of the most commonly asked questions about AE and doubles as a rehabilitation tool.  Increase your knowledge and become a strong advocate quickly and easily with AE trivia cards. 

We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product. 

Shop on line amazon Smiles FB - THE HERD November 2020~ 2nd edition

During the COVID-19 pandemic, it is vitally important that you #StayHome and practice #SocialDistancing. Grocery shopping, as well as all shopping, should be done online.

When you shop Amazon Smiles and select IAES as the non-profit you want to support, Amazon will donate 5% of our purchases to the International Autoimmune Encephalitis Society.

The need for our services has increased exponentially. This simple act of kindness, will support the work we do and advance our ability to service the community.

baC - THE HERD November 2020~ 2nd edition

Are YOU an IAES angel? Do you love someone with AE? Do you want to raise AE awareness to not just support AE Warriors but lead researchers to finding a cure?  The IAES Angel is someone who lifted IAES upward by ensuring that comfort, guidance and improved health is brought into an AE patient’s life.

IAES Angels are motivated by their Spirit of giving.  They are Champions in raising AE awareness. Your devotion to supporting our mission and improving the lives of those who suffer from AE is felt mightily and immediately put to use. 

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you this badge and profile frame to place on your Facebook page or Website.  As badges ‘take flight’ heralding IAES has been ‘touched by an angel’, others will take notice and they too may find their wings. Together, we will create a future where AE is eradicated from this world and only referenced in medical history books.

mission2 - THE HERD November 2020~ 2nd edition

Your donations are greatly appreciated. Every dollar raised allows us to raise awareness and personally help Patients, Families and Caregivers through their Journey with AE so that best outcomes may be reached. Your contribution to our mission will help save a life and improve the quality of lives for others.  Be a part of the solution by supporting IAES.

seal2 - THE HERD November 2020~ 2nd edition
International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. 


Driven by the knowledge that “Education is Power”, Int’l AE Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones on Face Book, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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