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THE HERD December 2020~ 1st edition

theherd - THE HERD December 2020~ 1st edition

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

Selected Highlighted News in the field of Autoimmune

Encephalitis December 2020 1st edition

In this Issue~

  • *Announcements: Shop & Support IAES,  The Neuroscience of Stress Lecture Dec 3rd,  Sales at the AE Warrior Store
  • *Children’s Corner: Largest COVID-19 contact tracing study to date finds children key to spread, evidence of super spreaders, Holiday Word Scramble Puzzles 
  • *Most Popular Image Downloads:  Clinical Suspicion of AE, Stop. Someone in this house has a Weak Immune System poster

  • *COVID-19’s Impact on the AE Community: Supplementation with vitamin D in the COVID-19 pandemic?,  What the Data Say about Wearing Face Masks
  • *Most Popular Visual: Fatigue after Brain Injury, CSF-Serum models of autoantibody production
  • *Featured AE Articles: Diagnostic Challenge of Seronegative AE with Super-Refractory Status Epilepticus, Sleep disorders in anti-NMDAR encephalitis
  • *Clinician’s Corner: Management and prognostic markers in patients with autoimmune encephalitis requiring ICU treatment
  • *COVID-19 Clinician’s Corner: Tocilizumab is recommended for the treatment of severe COVID-19
  • *Open Access: Olanzapine and Lorazepam Used in the Symptomatic Management of Excited Catatonia Secondary to Anti-N-Methyl-D-Aspartate Receptor Encephalitis


Ways to Shop & Support IAES

Have you wanted to support IAES, autoimmune encephalitis awareness, and the AE Warrior that you love?

Have you found our services helpful? Do you want to make sure patients are identified early and that they and their loved ones receive the best help possible during this difficult journey?

Here is an easy and affordable way to donate without feeling a thing when shopping with your Paypal account. Each time you check out you will be reminded that you can give $1 to IAES.

While shopping online via Amazon Smiles, you can support your favorite non-profit and get that great deal online!

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

Here is a handy tool that will automatically redirect you to when you are shopping so you never have to worry about forgetting to type it in to ensure benefits go to IAES. 


Under Pressure: The Neuroscience of Stress- December 3rd

Are you interested in learning more about the amazing neuroscience research being done in the UPENN community? Tune in on December 3rd at 6PM EST to hear from leading neuroscience experts about their research into the neuroscience of stress. 


Raise Awareness by Shopping at the AE Warrior Store

Holiday Sales are on and frequently change as to what merchandise is discounted. During this shopping season, we encourage you to visit our AE Warrior store often in order to get that great deal. You will find 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. 

Visit #AE Warrior Gifts on the IAES website for some great stocking stuffer ideas, many offerings there are free. Don’t forget to get a deck of AE Trivia Cards for your AE Warrior, family members, or your Neurologist. 


Children’s Corner 

Largest COVID-19 contact tracing study to date finds children key to spread, evidence of superspreaders

A study of more than a half-million people in India who were exposed to the novel coronavirus SARS-CoV-2 suggests that the virus’s continued spread is driven by only a small percentage of those who become infected. Furthermore, children and young adults were found to be potentially much more important to transmitting the virus — especially within households — than previous studies have identified.

“Our study presents the largest empirical demonstration of superspreading that we are aware of in any infectious disease,” Laxminarayan said. “Superspreading events are the rule rather than the exception when one is looking at the spread of COVID-19, both in India and likely in all affected places.”

The findings provide extensive insight into the spread and deadliness of COVID-19 in countries such as India. The researchers also reported, however, the first large-scale evidence that the implementation of a countrywide shutdown in India led to substantial reductions in coronavirus transmission.

Christmas Word Scramble puzzles for Cognitive Exercise and Rehabilitation

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 Christmas word scramble worksheets feature holiday words to unscramble and a picture to color. The word scramble is printable, and the scrambled words change each time you visit this site (link below). 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

Clinical Suspicion of Autoimmune Encephalitis

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

COVID-19’s impact on the AE Community

Supplementation with vitamin D in the COVID-19 pandemic?


Supplementation with daily (preferred) or weekly doses of vitamin D, aimed at increasing the concentration of serum 25(OH)D to the optimal level of 30–50 ng/mL could be considered a global strategy, being more important in countries with a high prevalence of vitamin D deficiency and particularly in those patients with COVID-19 who are a high risk of ICU admission. Discuss this with your doctor. 




To be clear, the science supports using masks, with recent studies suggesting that they could save lives in different ways: research shows that they cut down the chances of both transmitting and catching the coronavirus, and some studies hint that masks might reduce the severity of infection if people do contract the disease. Back to ballistics,  the masks debate is closely linked to another divisive question: how does the virus travel through the air and spread infection? The moment a person breathes or talks, sneezes or coughs, a fine spray of liquid particles takes flight. Some are large — visible, even — and referred to as droplets; others are microscopic, and categorized as aerosols. Viruses including SARS-CoV-2 hitch rides on these particles; their size dictates their behavior. 

Droplets can shoot through the air and land on a nearby person’s eyes, nose, or mouth to cause infection. But gravity quickly pulls them down. Aerosols, by contrast, can float in the air for minutes to hours, spreading through an unventilated room like cigarette smoke. 

What does this imply for the ability of masks to impede COVID-19 transmission? The virus itself is only about 0.1 μm in diameter. But because viruses don’t leave the body on their own, a mask doesn’t need to block particles that small to be effective. More relevant are the pathogen-transporting droplets and aerosols, which range from about 0.2 μm to hundreds of micrometres across. (An average human hair has a diameter of about 80 μm.) The majority are 1–10 μm in diameter and can linger in the air for a long time. 

Most Popular Visual~






Fatigue After Brain injury



Featured AE Articles~

Diagnostic Challenge of Seronegative AE with Super-Refractory Status Epilepticus

Autoimmune encephalitis is a spectrum of disease with neurological and psychiatric symptoms. The presentation may vary based on the type of antibodies causing it. In our case, the main concerning issue was super-refractory status epilepticus, requiring continuous anesthesia to suppress EEG burst activity. This poses a diagnostic challenge as present laboratory techniques lack specificity to identify this. There are many unidentified intracellular and extracellular protein receptors; hence, a negative serology panel for antibodies should not delay the initiation of primary immunomodulatory therapy (steroids, plasmapheresis). A strong clinical suspicion of disease, after a panel to rule out paraneoplastic and infectious serology, supported by MRI imaging, is the mainstay to identify seronegative autoimmune encephalitis. Primary therapy should be initiated to prevent disease progression. If the patient continues to have symptoms despite steroids and IVIG, then second-line immunotherapy with agents like rituximab can be used. Our patient recovered well after second-line immunotherapy and was discharged without any cognitive or neurological symptoms.


Sleep disorders in anti-NMDAR encephalitis

Objective: To describe the sleep disorders in anti-NMDA receptor encephalitis (anti-NMDARe).

Methods: Patients recovering from anti-NMDARe were invited to participate in a prospective observational single-center study including comprehensive clinical, video-polysomnography (V-PSG) sleep assessment and neuropsychological evaluation. Age and sex-matched healthy participants served as controls.

Conclusions: Sleep disturbances are frequent in anti-NMDARe. They show a temporal pattern (predominantly insomnia at onset; hypersomnia during recovery), associate with behavioral and cognitive changes, and can occur with confusional arousals during NREM sleep.

Clinician’s Corner

Management and prognostic markers in patients with autoimmune encephalitis requiring ICU treatment



 In patients with AE, mechanical ventilation, sepsis, and autonomic dysregulation appear to indicate longer or incomplete convalescence. Classic ICU complications better serve as prognostic markers than the individual subtype of AE. Increased awareness and effective management of these AE-related complications are warranted, and further prospective studies are needed to confirm our findings and to develop specific strategies for outcome improvement.


COVID-19 Clinician’s Corner



Tocilizumab is recommended for the treatment of severe COVID-19


The use of tocilizumab to block interleukin 6 (IL-6) signaling in COVID-19 patients may be safer than expected. IL-6 is produced to stimulate the acute-phase response to deal with various infections and tissue injuries. Upon infection with SARS-CoV-2, pathogenic T cells are activated rapidly to produce proinflammatory cytokines. Tocilizumab is a monoclonal antibody that blocks IL-6 receptors

IL-6 plays an important part in antibody production, and antibodies are the body’s most direct and effective immune weapon against viruses. Therefore, whether IL-6 blockade by tocilizumab will affect the antiviral immune response of COVID-19 patients (especially the formation of antiviral antibodies) has become an important concern for targeted IL-6 immunotherapy in COVID-19 patients. The increase in the level of antiviral antibodies may have been related to blockade of the excessive IL-6 signal, alleviation of the ‘inflammatory storm’ (IS).

There are millions of confirmed COVID-19 cases worldwide. We lack efficacious drugs to treat severe COVID-19. Tocilizumab could relieve the IS of COVID-19 patients to buy time for antiviral treatment and recovery of the immune system. The best time for tocilizumab treatment for COVID-19 is during bilateral multilobe infiltration in the lungs, which is also the peak period of the IS. 

Olanzapine and Lorazepam Used in the Symptomatic Management of Excited Catatonia Secondary to Anti-N-Methyl-D-Aspartate Receptor Encephalitis



The following case describes the clinical course of an 18-year-old female with excited type catatonia secondary to anti-NMDA receptor encephalitis.

The patient had been brought to the ED by her parents in an acutely psychotic state characterized by profound disorganization and vivid visual hallucinations. She was admitted to psychiatry and her hospital course was significant for both retarded and excited type catatonia, autonomic instability, and sensitivity to multiple neuroleptics. Given the atypicality of her symptoms and a family history of autoimmune disease, workup for autoimmune encephalitis was performed. MRI of the pelvis showed an indeterminate ovarian mass and laboratory studies were generally unremarkable.

The catatonic symptoms resolved over the course of three weeks, eventually responding to a combination of lorazepam and olanzapine. Following discharge, a cerebrospinal fluid (CSF) panel resulted with positive titers for anti-NMDA receptor antibodies.

This case illustrates the need to consider autoimmune encephalitis in cases of catatonia. It also presents a case in which symptoms of anti-NMDA receptor encephalitis potentially remitted without immunotherapy or mass resection.

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. 

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.

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.

International Autoimmune Encephalitis Society is proud to be a platinum level participant on the Guide Star exchange, demonstrating or commitment to financial transparency.  IAES is a charitable non-profit 501 (c)(3) organization. Tax ID#81-3752344

Donations raised are greatly appreciated and directly support research, patients, caregivers, and families through their journey so the best outcomes can 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.

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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