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Selected Highlighted News in the field of Autoimmune
Encephalitis September 2020 2nd edition
In this Issue~
* Announcements: IAES honored at The George H.W. Bush Points of Light Awards Celebration, Survey on the impact of COVID-19 & autoimmune diseases, AE Warrior Store, AE Trivia Playing Cards
*Children’s Corner: Adjusting Your Child’s IEP or 504 Plan for Distance Learning, Covid-19: gastrointestinal symptoms are common in children, Back-to-school Guidance
*Most Popular Visual of the Month: Zebra coloring page, Stop. Someone in this house has a Weak Immune System poster
*COVID-19’s Impact on the AE Community: Prepare Now For Your Pandemic Winter. Your Future Self Will Thank You, How long is COVID-19 detected in Children?
*Most Popular Download: What is Ataxia? Video: AE Recognizing signs at onset, Diagnosis, and Treatment
*Clinician’s Corner: GAD antibodies in neurological disorders — insights and challenges
*COVID-19 Clinician’s Corner: Postinfectious brainstem encephalitis associated with SARS-CoV-2
*Open Access: Anesthetic care for patients with anti-NMDA receptor encephalitis
IAES Honored at The George H.W. Bush Points of Light Awards
IAES was honored at The George H.W. Bush Points of Light Awards in recognition of our development of Autoimmune Encephalitis Trivia Cards and COVID-19 response supporting the AE community and beyond.
The George H.W. Bush Points of Light Awards honors organizations who demonstrate the traits of our 41st president – integrity, empathy, respect, optimism, a conviction in the face of opposition, and belief in the power of the human spirit.
Survey: Emotional, Social, and Physical Impact of COVID-19 on the Autoimmune Disease Community
Thank you for participating in my study about the emotional, social, and physical impact of COVID-19 on the Autoimmune Disease community and how patients attempt to cope with their disease. My name is Scott Weitman and I am a 17-year-old high school student living with an autoimmune disease called alopecia areata. Alopecia areata causes me to lose my hair and I was devastated by being a student with no hair.
The goal of my survey-based project is to analyze the emotional, social, and physical impact of COVID-19 on autoimmune disease patients as well as identifying effective coping strategies for people living with an autoimmune disease.
Important information to know before beginning the survey:
-The purpose of this study is to:
-gain insight into the emotional, social, and the physical impact of COVID-19 on autoimmune diseases.
-gain insight into how people attempt to cope with their autoimmune disease.
-share effective coping strategies with people struggling with an autoimmune disease.
-The survey will take approximately 10 minutes to complete.
-The survey is for anyone above the age of 7 years old.
-If the participant is younger than 18 years old they have to have parental consent.
-An asterisk* means that the question is required.
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.
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.
Children’s Corner (Students & Parents)
Adjusting Your Child’s IEP or 504 Plan for Distance Learning
Your child’s IEP or 504 Plan was not designed for distance learning. But here we are. And now it falls on parents and educators to make new accommodations for students with AE and other learning challenges when they’re outside the classroom. Here are common challenges in 2020, and advice from a learning expert.
You’ll find this resource and many other helpful resources on IAES’ #StrongerTogether website page.
COVID-19 Back to School Guidance
Covid-19: UK studies find gastrointestinal symptoms are common in children
Gastrointestinal symptoms are common in children infected with SARS-CoV-2 and should trigger tests for the virus. Tom Waterfield, the lead author of the antibodies study, told The BMJ, “Based on our findings I think that gastrointestinal symptoms should be added to the current list—high temperature, cough, and loss or change in sense of smell or taste—that trigger testing for coronavirus.” He added, “Diarrhea and vomiting in children should trigger a test.”
Most Popular Download
Zebra Coloring Page
IAES offers a variety of coloring pages and word search puzzles on the Cognitive Exercises page under the ‘For Patients’ tab on our website. Therapists, AE patients, caregivers, and family members frequently write to us to let us know how much these offerings have helped them during rehabilitation from acquired brain injury. This zebra wins the honor of ‘most downloads’ in the last two weeks.
Visit the many choices there for you to enjoy. Adult coloring is also beneficial for stress management.
Poster: Stop Someone in This House Has a Weak Immune System
COVID-19’s impact on the AE Community
Prepare Now For Your Pandemic Winter. Your Future Self Will Thank You
Enjoy this comic that accommodates a 12-minute podcast outlining what you can do to prepare for the Winter ahead living with COVID-19. Be proactive now knowing that social distancing options will be impacted due to colder weather.
Clinical Characteristics and Viral RNA Detection in Children With Coronavirus Disease 2019 in the Republic of Korea
Most Popular Visual~
Ataxia – A Symptom of AE
IAES Video: Autoimmune Encephalitis ~ Recognizing signs at onset, Diagnosis, and Treatment
GAD antibodies in neurological disorders — insights and challenges
COVID-19 Clinician’s Corner
Postinfectious brainstem encephalitis associated with SARS-CoV-2
Immune-mediated neurological sequelae following infection with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) are becoming increasingly evident and can affect both the peripheral and central nervous system. We report a postinfectious brainstem syndrome in a patient with COVID-19 who presented with generalized myoclonus, ocular flutter with convergence spasm, and acquired hyperekplexia. Clinical improvement was seen following corticosteroids, highlighting this as a possible treatment in patients where a post-COVID-19 autoimmune encephalitis is suspected.
Anesthetic care for patients with anti-NMDA receptor encephalitis
The study cohort included six patients, ranging in age from 2 to 18 years, who required anesthetic care during 21 procedures. Airway management included a laryngeal mask airway ( n = 8), endotracheal intubation ( n = 12), and native airway with spontaneous ventilation ( n = 1). Intravenous (IV) induction with propofol was used in 17 procedures for five patients, including three that required rapid sequence intubation using rocuronium or succinylcholine. Inhalation induction with sevoflurane in nitrous oxide (N2 O)/oxygen (O2 ) was chosen for two procedures in two patients. A combination of both induction techniques was used for two patients in two procedures. Maintenance anesthesia was accomplished with a volatile agent, predominantly sevoflurane, for 18 of the 21 procedures; propofol infusion for one procedure; and single dose of propofol was used for two short procedures. N2 O was not used for maintenance anesthesia in any of the encounters. None of the patients exhibited adverse events, including hemodynamic instability, thermoregulatory problems, or respiratory events perioperatively. Postoperatively, there was no observed deterioration in clinical status attributed to anesthetic care.
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.
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.