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theherd - THE HERD March 2021~2nd edition

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

Selected Highlighted News in the field of Autoimmune Encephalitis~ March 2021 2nd Edition

In this Issue~

    • *Announcements: AE Speakers Series Webinar Recordings Now Available, AE Study in Australia seeks your participation
    • *Children’s Corner (for all ages): Travel from home: 13 virtual museums and galleries to tour, St. Patrick’s Day Word Search
    • *ABI Rehabilitation: Visual-spatial Skills Worksheets, 7 Surprising Ways Puzzles Are Good for Your Brain
    • *Useful Tips for the AE Warrior: 6 Easy Ways to Manage and Organize Your Medication
    • *Most Popular Downloads: Encephalitic Presentation, 5 Types of AE and What is seen in ICU
    • *COVID-19’s Impact on the AE Community:  Interim Public Health Recommendations for Fully Vaccinated People, MOG-associated encephalitis following SARS-COV-2 infection

    • *Featured AE Article: 

      Normally Sharp, He Was Chronically Confused. What Was Going On?

    • *Clinician’s Corner: Autoimmune encephalitis: proposed best practice recommendations for diagnosis and acute management
    • *COVID-19 Clinician’s Corner: COVID-19 May Hide in Brains and Cause Relapses
    • *Open Access: Characteristics and outcome‐related factors of seizure at the first onset of autoimmune encephalitis: A retrospective study
    • *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
    • *AE Warrior Store: Puzzles featuring original art by AE patients

Webinar Recordings From Speakers Series Now Available

view-recordings-Speakers Series-Feb-2021

All five webinars in our AE Awareness Month Speakers Series have been a rousing success.  IAES is so pleased to have gathered experts of such caliber to present on the key areas of Autoimmune Encephalitis. The five speakers each discuss a topic, that when combined, provides the audience with a completed education of autoimmune encephalitis.  Providers and patients alike have hailed this series as the best they have attended on autoimmune encephalitis.  Recordings are available on the AE Speakers page and within the IAES video library.

  Webinar #1 Eoin P. Flanagan, M.B, B.Ch., Mayo Clinic, Rochester Presented on Autoimmune Encephalitis   

Webinar #2 Justin R. Abbatemarco, MD, Presented on AE Treatments and long-term management 

Webinar #3 Belinda Lennox, DM FRCPsychPresenting Presented Autoimmune Psychosis and Psychosis in Autoimmune Encephalitis

Webinar #4 Stefanie Rodenbeck, MD, Presented on Autoimmune Epilepsy 

Webinar #5 Michael Sweeney, MD, Presented on Pediatric Autoimmune Encephalitis

AE Study Seek Your Participation

Dr Mastura Monif-Victoria-Australia

AE Patients Residing in Australia ~Your Participation is Needed

Dr. Mastura Monif, a member of the IAES Medical Advisory board who is located in Australia, is conducting a study on autoimmune encephalitis and seeks patient participation.

The Monif Group 

Leads The Australian Autoimmune Encephalitis Consortium Project that consists of up to 13 health and academic centers around the country bringing national experts together to tackle the issue of Autoimmune Encephalitis facing the Australian population.

The group has formed the Australian Autoimmune Encephalitis Consortium bringing together national experts from 4 states around the country to tackle the issue of AE facing the Australian Health sector. With this study, they hope to produce the largest cohort of retrospective and prospective cases of AE in Australia with the aim of gaining a better understanding of disease trajectory as well as identifying key clinical, electroencephalogram/seizure phenotype, cellular and biochemical, radiological & cognitive biomarkers of disease onset, progression & outcome. This study brings together a collaborative & multidisciplinary team of neurologists, neuroimmunologists, epilepsy experts, neuropsychologists, neuroradiologists, psychiatrists, and neuroscientists. The findings are hoped to generate extensive data regarding AE as well as the production of clinical guidelines for early identification, diagnosis & treatment of these devastating conditions.

E-mail Dr. Monif regarding Study Participation


Children’s Corner

Travel from home: 13 virtual museums and galleries to tour

Coping with the lack of social and learning activities in the age of COVID-19 can be challenging.

Museums, movie theaters, concerts and other events have all taken a hit since COVID-19 emerged. Luckily, the creative world has gotten — creative — and found new, alternative ways to provide virtual cultural and educational experiences during these challenging times. If you’re hankering for a little art immersion, there are a variety of virtual museum tours you can take, all from the comfort of your home. Best of all, you won’t have to navigate a sea of crowds and selfie sticks to get a closer look at a Van Gogh or Monet.

Here is a guide to the best virtual museum tours currently available.

Find other virtual destination suggestions on the #StrongerTogether page of the IAES website.



St. Patrick’s Day Word Search

St Patricks Day-hard

Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from AE.  They are a great activity to help your AE warrior develop their problem-solving and analytical skills.

Here’s a fun word search puzzle for St. Patrick’s Day. It is ranked “Hard” and features hidden St. Patrick’s Day words to find.

ABI Rehabilitation From AE

Cognitive rehabilitation- FB-links to cognitive exercise worksheets on website

Visual-spatial Skills Worksheets

Are you working on your cognitive rehabilitation from AE?

Our friends at HappyNeuron Pro have released its 32nd worksheet packet!

Visual-spatial skills are needed for math, being able to locate ourselves on a map, and being able to manipulate objects in our everyday lives. Sometimes, brain injury from AE can cause people to have difficulty with visual-spatial skills.

Packet #32 Visual-spatial skills are needed for math, being able to locate ourselves on a map, and being able to manipulate objects in our everyday lives. In this packet, you will find 4 exercises that target visual-spatial skills. Download it now and start working on those skills. 

7 Surprising Ways Puzzles Are Good for Your Brain

Besides being fun, working on puzzles gives you a real mental workout. Puzzles are a great family activity or solo pastime. Whether your puzzle of choice is a 1,000-piece jigsaw, the New York Times Sunday crossword puzzle, a wood brain teaser, or a 3D mechanical puzzle, doesn’t really matter because all puzzles share one key element, they power your brain.

Puzzles exercise both sides of your brain. They improve memory, problem-solving skills, visual and spatial reasoning, enhance your mood, relieve stress, and increase I.Q. 

Check out the jigsaw puzzle collection at the AE Warrior Store. Original art by autoimmune encephalitis patients makes these puzzles a unique gift, challenge & collectors item.

Useful Tips for Patients & Families

6 Easy Ways to Manage and Organize Your Medication

Managing medications when you have AE can be a true challenge. Pill organizers and using phone alarms to remind you when to take your medications along with keeping them organized can help. It can still be challenging to track when refills are needed to be called in or when to contact the doctor to update prescriptions.
These tips may be helpful for those of us who are on several medications.

Most Popular Download

5 Types of AE and What is seem in ICU


Encephalitic Presentation

Encephalitis_Presentation_treatment (2)

COVID-19’s Impact on the AE Community

Interim Public Health Recommendations for Fully Vaccinated People



The Centers for Disease Control and Prevention (CDC) issued its first set of recommendations on activities that people who are fully vaccinated against COVID-19 can safely resume.

The new guidance—which is based on the latest science — includes recommendations for how and when a fully vaccinated individual can visit with other people who are fully vaccinated and with other people who are not vaccinated. This guidance represents a first step toward returning to everyday activities in our communities. CDC will update these recommendations as more people are vaccinated, rates of COVID-19 in the community change and additional scientific evidence becomes available.

Everyone – even those who are vaccinated – should continue with all mitigation strategies when in public settings. As the science evolves and more people get vaccinated, we will continue to provide more guidance to help fully vaccinated people safely resume more activities.

The following recommendations apply to non-healthcare settings.

Fully vaccinated people can:

Visit with other fully vaccinated people indoors without wearing masks or physical distancing.

Visit with unvaccinated people from a single household who are at low risk for severe COVID-19 disease indoors without wearing masks or physical distancing.

Refrain from quarantine and testing following a known exposure if asymptomatic.

For now, fully vaccinated people should continue to: (continue reading)


MOG-associated encephalitis following SARS-COV-2 infection

This is a case report of a 23-year old man with a history of childhood non-febrile seizures, presented to the hospital because of cognitive slowing and personality changes. Five weeks prior, he gradually developed a moderate but nearly constant, left-sided headache associated with dysesthesias. During this timeframe, he had known exposure to SARS-CoV-2 infected coworkers.

This case expands the spectrum of parainfectious neurological consequences associated with SARS-CoV-2 infection and highlights possible links between SARS-CoV-2 and autoimmune neurologic disease.

A variety of neurologic manifestations of COVID-19 infections have been reported. Here, we present a case of steroid-responsive MOG-antibody-associated encephalitis, characterized by cognitive decline, headaches, fever, unilateral FLAIR-hyperintensities, and leptomeningeal enhancement, that occurred in the setting of a recent COVID-19 infection.

Featured AE Article~

Normally Sharp, He Was Chronically Confused. What Was Going On?

This easy read article is from the New York Times. (Yes awareness is rising!).

It is about a gentleman who became suddenly ill and started experiencing behavior change.

At first, in the ER, it was unclear what was wrong. A few weeks later the older brother got a call from a neurologist who had seen their brother after his E.R. visit. One of the tests sent by the hospital was positive. It looked as if his brother may have Creutzfeldt-Jakob disease (C.J.D.), a rapidly progressive neurodegenerative disease that is usually fatal within a year of diagnosis, (which mimics AE).

A few weeks later, the man had a shouting attack, and his sister, the family was taking turns staying with him out of concern, called 911. Upon arrival at the hospital, it was noted that seizures are rare for CJD, it could be something else. The neurologist on call ordered an EEG. While monitoring the patient he had a classic seizure seen in LGI1 Autoimmune encephalitis, a faciobrachial dystonic seizure. An accurate diagnosis of limbic encephalitis was made.

With treatment, the patient slowly recovered.


Clinician’s Corner

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Autoimmune encephalitis: proposed best practice recommendations for diagnosis and acute management

This is a two-part article. 

The first part of the best practice recommendations, the authors covered the clinical presentation, diagnostic workup, and acute management of AE guided by published studies and the results of the AEACN survey providing updated recommendations for the management of patients with suspected AE. The second part focuses on bridging therapy, symptomatic treatment, and maintenance immunotherapy. A discussion of the limitations will be presented at the end of the second part.

A summary of the best practice recommendations for AE diagnosis and acute management is presented in box 1.

We are grateful to Autoimmune Encephalitis Alliance for their dedication to overseeing this three-year project. 

woman in pain wearing mask covid

COVID-19 Clinician’s Corner


COVID-19 May Hide in Brains and Cause Relapses

The coronavirus may remain in people’s brains after infection and trigger relapses in patients who thought they had recovered, according to a new study published in the journal Viruses.

The research team found that the virus was located in the brains of mice at a level that was 1,000 times higher than in any other part of the body. Viral loads in the lungs began to drop after three days but remained high in the brain on the fifth and sixth days after infection, which is when the disease became more severe.

“Once it infects the brain, it can affect anything because the brain is controlling your lungs, the heart, everything,” he said. “The brain is a very sensitive organ. It’s the central processor for everything.”

image 15 - THE HERD March 2021~2nd edition

Characteristics and outcome‐related factors of seizure at the first onset of autoimmune encephalitis: A retrospective study

Seizure outcome of autoimmune encephalitis (AE) varies from seizure‐free to refractory epilepsy, and the associated factors remain unclear. We aimed to describe seizure characteristics, identify seizure outcome‐related factors and discuss the medication strategy of antiepileptic drugs (AEDs) at the first onset of AE.


In the acute phase of AE, seizure characteristics may be considered in the selection and utilization of AEDs. Onset with seizure and status epilepticus (SE) occurrence may lead to a poor seizure outcome, while human gamma globulin administration and low antibody titer may contribute to a good seizure outcome. For patients who have achieved seizure‐free status in the acute phase, the factors mentioned above may be considered in the withdrawal strategy of AEDs after the acute phase. Early identification of patients qualified to discontinue AEDs can avoid the additional adverse effects and high costs of AEDs, thereby easing the treatment burden borne by patients.

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. 

AE Warrior Store

Puzzles Featuring Original Art by AE Warriors

New arrivals ~ The AE Warrior Store has 13 puzzles featuring original art by autoimmune encephalitis patients available.  Puzzles come in three sizes, all rated as ‘challenging’, 60-pieces, 110-pieces, and 252-pieces. A unique gift for any AE Warrior working on cognitive rehabilitation due to brain injury from AE & a wonderful collector’s item. Working on a puzzle designed by a fellow AE patient who has lent their talent to an effort to help other AE patients reach their rehabilitation goals will inspire any AE Warrior and reinforce the knowledge that no one walks this journey alone. We are family to each other and are always #StrongerTogether. 

Puzzles are a highly recommended cognitive exercise for anyone with a brain injury or in recovery from illness. Puzzles assist with comprehension, organization, memory, hand-eye coordination, fine motor skills and provide goal setting, patience, and a sense of achievement.

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.

shop with Paypal-Facebook Post
Shop on line amazon Smiles FB - THE HERD March 2021~2nd 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.

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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.

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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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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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