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Selected Highlighted News in the field of Autoimmune

Encephalitis May 2020 2nd edition

• •  Announcements: IAES Launches AE Warrior Comic Strip, New Store for AE Trivia Playing Cards,  PBS documentary seeks AE Warriors to Interview 
    
  • Children’s Corner: Julie’s Library
    
  • Most Popular Visual of the Month: Someone in this house has a weak immune system poster
    
  • Most Popular APP: Seizure Tracker App
    
  • What Parents need to Know: New COVID-19 symptoms in Children, Mystery Inflammatory Syndrome, I Am That Parent
    
  • Clinician’s Corner: The Neurology and Neuropsychiatry of COVID-19, How to Make and Apply PPE Portraits
    
  • Open Access: Current Progress on Assessing the Prognosis for Anti-N-Methyl-D-Aspartate Receptor (NMDAR) Encephalitis
    

Introducing: A Day in the Life of an AE Warrior™

IAES’ reputation for being the best resource for autoimmune encephalitis grew, in part, out of our user-friendly multi-media approach to teaching the public about this complex group of disorders. 

By focusing on the AE Warrior’s passing skills while supporting their deficits, we developed teaching strategies that allow a patient or caregiver to learn quickly and easily. ramp up their advocacy skills and feel empowered through their knowledge. 

Small pieces of information are shared enabling the individual to process it, retain it, and quickly build on their understanding.  These positive ‘speed learning’ strategies is why IAES members have such successful outcomes and report experiencing ease to their stressful journey to recovery and rehabilitation. 

Our newest addition to our teaching tool kit is a comic strip series called “A Day in the Life of the AE Warrior™”

Watch for a new comic to be posted on our Facebook Public page and support group every Sunday. A comic strip section will be added to our website’s ‘Memes about AE’ in the near future.  Laugh and learn along with IAES.

AE Clinicians and AE Warriors have been contacting us with great enthusiasm as they receive their AE Trivia card decks.  The support patients have been reporting is so exciting and gratifying to hear. This simple tool appears destined to be the greatest personal support any AE patient can have.

Autoimmune Encephalitis Trivia playing cards is the first product in the world designed to educate patients, therapists, caregivers, teachers, and friends about autoimmune encephalitis and act as an important patient rehabilitation tool all in one. AE experts around the world have shared their excitement about this product and how it can help patients.

Created by Tabitha Orth, IAES President and in collaboration with Josep Dalmau, M.D., Ph.D. (The World’s leading expert on AE), AE Trivia cards answers the most common questions about AE. 

Autoimmune Encephalitis Trivia cards are a vital educational/rehabilitation tool specifically designed to support AE patients, caregivers, loved ones, therapists and teachers.  Each set includes 52 cards, 2 Jokers, an information card and an instruction booklet. Cards contain questions and answers to the most common questions patients ask about the disease covering diagnosis, symptoms, treatment, and recovery.  

AE trivia cards double as a rehabilitation tool for cognitive and memory loss challenges from brain injury. Through the repetition of playing, the user receives an outstanding educational foundation about AE that empowers them. Color coding is used to support lower baselines and children’s games.

As re-learning/re-training the brain advances from color and number matching and memory games, other suggested games outlined in the accompanying booklet can be utilized.  AE trivia addresses brain functions such as long- and short-term memory, attention level, reading, reasoning skills, and cognition. 

Family members, caregivers, and loved ones also benefit by learning about AE through the questions and answers provided on the cards.  Therapists and Teachers can incorporate the cards in their rehabilitation programs or student educational goals.

AE Trivia cards are on sale to the public at the introductory low price of $15 per deck. 

PBS is interested in speaking to adults (18+) who were initially diagnosed with mental illness, perhaps even institutionalized, before their anti-NDMA autoimmune encephalitis was discovered. From PBS’ perspective, ideal candidates will have videos or audio recordings of their journey (personal phone recordings, hospital/ diagnostic videos or other documentation of their symptoms and/or treatment) so we can visualize your story. The process will involve some back and forth via email/ phone to get to know potential subjects and their stories over the next few weeks. We’d love to hear from you. 

Julie’s Library

Julie’s Library: Story Time with Julie Andrews. Join beloved icon Julie Andrews for storytime as she reads some of her favorite children’s books via podcast.

You will also find Julie’s Library in our Children’s Corner on our website. 

What Parents need to Know

Children are falling sick with a rare mystery inflammatory syndrome linked to Coronavirus

The new condition that’s being linked to COVID-19 got an official name this week: pediatric multisystem inflammatory syndrome.

Children and teens with the rare but potentially dangerous complication have been identified in at least seven states and the Washington, D.C., area as well as some parts of Europe. The condition can resemble features of other inflammatory illnesses like the Kawasaki Disease and toxic shock-like syndrome.

Physicians and scientists are working hard to understanding the mechanisms at play, and why only some children are so severely affected,” she said. Dr. John revealed that “the feature that’s been most concerning is that they have problems with their heart function.”

Dr. John added: “In general, families do not need to worry about this. I doubt that this is really new. I think it’s just really newly recognized. I hope what comes of this is that, because we’re seeing more cases, it will not take long before we will be better at recognizing this and treating it.”

I am that Parent

As a pediatric hospitalist at a tertiary referral center, I often care for children with far more medically complex disorders than my son. Many of their families, like us, travel in search of expertise for the rarest and most challenging cases.

I wish I could apologize to those families now.

Not only did I not “get it,” I developed a sense of frustration with and a condescending attitude toward many families over the years.

I can remember sitting in care conferences and wondering, “Why is this family being so difficult?” or “Why can’t they just accept the expert advice and do the right thing?” I think of the trepidation that my hospitalist team felt as we started family-centered rounds outside certain rooms, the tension, the conflict between the medical experts and the parent experts. I remember joking not so long ago after one of those conflicts that I would never be that parent.

I am that parent.

Most Popular Visual of the Month

If you have a family member with autoimmune encephalitis, we are encouraging our members to post this poster in a front window or on your front door to alert anyone approaching that a resident inside is at high risk for infection and to be cautious. 

Most Popular APP of the Month

Seizure Tracker APP

This has been recommended by Neurologists who have treated AE patients. The specific focus is on seizures. You can track seizures and other symptoms in a timeline (graph) with medications and lab work. It might be a good option for those predominantly dealing with seizures as a main symptom or residual issue from AE.

Clinician’s Corner

The Neurology and Neuropsychiatry of COVID-19

Stay up to date with research about encephalitis and autoimmune encephalitis syndromes that COVID-19 is triggering.

Evidence on the neurological and neuropsychiatric manifestations and complications of COVID-19 infections is emerging and this is likely to accelerate as the pandemic develops and clinical syndromes are detected, characterized and their mechanisms investigated.

Summary of evidence to date

As of 1st May there have been 52 data papers (including case reports/series) and 27 reviews (including editorials/position papers).

The clinical syndromes reported so far include stroke (13 studies), Guillain-Barré Syndrome

GBS (8 studies), encephalopathy/encephalitis/mengingoencephalitis (8 studies) psychiatric (4 studies), epilepsy (3 studies), mixed neuropsychiatric (3 studies), other clinical syndromes (2 studies; ADEM and acute myelitis), epidemiology (10 studies) and mechanistic (1 study).

Much like the mechanisms that make placebo treatments work, we know that provider warmth and competence are positively associated with health at the biological level. Personal protective equipment (PPE) signals competence; portraits could be one of the only signals of warmth for patients who have, or may have, COVID-19. PPE Portraits are disposable portrait picture stickers (4×5 inches) put on PPE that can help patients and providers form a personal connection to positively impact patient health.

Current Progress on Assessing the Prognosis for Anti-N-Methyl-D-Aspartate Receptor (NMDAR) Encephalitis

The clinical manifestations of anti-NMDAR encephalitis are complicated. Patients tend to exhibit severe symptoms, and recovery is slow. At present, research on the prognosis of anti-NMDAR encephalitis remains limited. We summarized the relevant research on the anti-NMDAR encephalitis, with a focus on factors affecting prognosis, such as disease pathogenesis, clinical manifestations, auxiliary examination, and treatments. Autonomic dysfunction and related complications may affect long-term prognosis, with cognitive impairment being the main dysfunction encountered during the long-term recovery of patients with anti-NMDAR encephalitis. When the abovementioned clinical manifestations appear, they should be actively treated as soon as possible in order to improve the chances for a positive outcome. Auxiliary inspection has gradually shown a capacity to predict prognosis. The value of EEG for predicting the long-term prognosis of patients is gradually highlighting its value, but the relationship between CSF antibodies, imaging, and prognosis needs further exploration. Immunotherapy started at an early stage is still the best treatment plan to obtain a good prognosis, but for some patients with poor curative effects, more and more effective treatment methods need to be explored to shorten the clinical course of patients, reduce disease complications and sequelae, and obtain a better prognosis. At present, there are still a limited number of studies focusing on the prognosis of anti-NMDAR encephalitis. Our review showcases future research directions. Clinical manifestations, auxiliary examinations, treatment options, and complications may all become prognostic indicators for patients, and we look forward to further prospective research in the future that is aimed at overcoming these difficulties.

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.

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.

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.