Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
August 2023 1st Edition
In this Issue~
- *Children’s Corner (for all ages): Anti-N-Methyl-D-Aspartate Receptor (NMDAR) Encephalitis in Children and Adolescents: A Systematic Review and Quantitative Analysis of Reported Cases, Letting Go Of My Thoughts
- *ABI Rehabilitation: Symptoms in AE Word Search
- *Helpful Tips for the AE Warrior: What Is a Patient Advocate, and How Can They Help Me?
- *Most Popular Visuals: Recovery, Living with Brain Injury from Autoimmune Encephalitis Handout
- *Featured AE Article: BRAIN ON FIRE – I was told I was having a breakdown and was sectioned – the reality was even more terrifying
- *Video: Navigating Insurance, Social Security Disability & Patient Assistance Programs
- *Clinician’s Corner: Therapy response in seronegative versus seropositive autoimmune encephalitis
- *Open Access: The three pillars in treating antibody-mediated encephalitis
- *Monthly Zoom Support Groups for Patients & Caregivers: Caregiver Monthly Zoom Support Group, #AETuesdayTries for patients and caregivers
- *AE Studies & Clinical Trial: The IGNITE Study, The ExTINGUISH Trial
- *AE Trivia Cards: The Single Most Important Educational/Rehabilitation Tool for AE
- *AE Warrior Store: Shop for AE Bling and Raise Awareness. Check out our new arrivals
- *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut
Anti-N-Methyl-D-Aspartate Receptor (NMDAR) Encephalitis in Children and Adolescents: A Systematic Review and Quantitative Analysis of Reported Cases
The sample (n=283) had a mean age of 10.8 years with 75.3% females. The most common prodromal and presenting symptom was seizure (29.7% and 63.3%, respectively). Partial and full recovery did not differ for prodromal and presenting symptoms. Multivariate logistic regression analysis found that (1) delusion were significantly associated with higher odds and aggressive behavior was associated with lower odds for abnormal findings on magnetic resonance imaging (MRI); (2) waxing and waning of symptoms were significantly associated with higher odds for abnormal electroencephalograms (EEG), and (3) increased age and psychosis were each significantly associated with increased odds, and sleep disturbance and orofacial dyskinesia with lower odds for tumor presence.
Given the pattern of findings, routinely obtaining MRI and EEG should be considered for anti-NMDAR encephalitis in children and adolescents presenting with delusion and waxing and waning of symptoms, respectively. Investigation of tumors should be considered in patients with anti-NMDAR encephalitis especially when psychosis is present.
Letting Go Of My Thoughts
Help your child express their concerns by using this exercise as a catalyst.
Other helpful exercises for children are found on the Children’s Corner webpage under the ‘For Patients’ tab on the IAES website.
ABI Rehabilitation From AE
Symptoms in AE Word Search
Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from AE.
IAES has created several word search puzzles that feature hidden keywords that will encourage and aid in your learning and understanding of autoimmune encephalitis.
Challenge yourself with this symptom in AE puzzle and others that you will find as free downloads on the ‘Rehab Cognitive Exercises’ page on the IAES website under the ‘For Patients’ tab.
Helpful Tips for Patients & Families
What Is a Patient Advocate, and How Can They Help Me?
If you are having questions or concerns about your care, many hospitals have patient advocates who can assist you in resolving concerns within the hospital system. In some hospitals they are employed by the hospital separately from nurse case managers or social workers. Recently there has been an increase in companies that provide privately hired patient advocates. This article describes the role and how patient advocates from both in the hospital or privately hired can be helpful during a hospitalization or long-term outpatient care.
Most Popular Visuals
Living with Brain Injury From Autoimmune Encephalitis
Featured AE Article
BRAIN ON FIRE –I was told I was having a breakdown and was sectioned – the reality was even more terrifying
A HOSPITAL WORKER was sectioned and told she was having a breakdown when she was really suffering from a rare brain infection.
Stacey Drummond, 33, called cops and claimed she was being stalked by a weirdo who was posting chocolate bars through her door.
Her behavior got very strange and increasingly violent and aggressive but repeated tests couldn’t find anything medically wrong with her.
She was locked up in a mental health hospital but after Stacey made a heartbreaking plea for help her sister Nicola, 36, kept pushing doctors to hunt for causes.
Eventually they realized they’d missed something in a test and Stacey, from Dundee, was diagnosed with one of the rarest brain diseases in the world.
Navigating Insurance, Social Security Disability & Patient Assistance Programs
Therapy response in seronegative versus seropositive autoimmune encephalitis
What is already known on this topic
Data on treatment response in patients with seronegative autoimmune encephalitis (AE), particularly in comparison to seropositive cases, are scarce.
What this study adds
Our study demonstrates that the vast majority of both patients with seronegative and seropositive AE benefitted from immunotherapies.
How does this study affect research, practice, or policy?
Immunotherapies should be considered in patients with AE, regardless of whether they are seronegative or seropositive.
Conclusion: Since both, patients with seronegative and seropositive AE, substantially benefitted from immunotherapies, these should be considered in AE patients irrespective of their antibody results.
The three pillars in treating antibody-mediated encephalitis
The importance of treating AE with antiseizure medication and antipsychotics is discussed controversially; however, standardized procedures should be ensured, especially for the initiation of treatment in severe disease. This review contrasts the three mainstays of treatment options in patients with AE and attempts to highlight the importance of 1) antiseizure therapy, 2) antipsychotic therapy, and 3) immunotherapy/tumor resection from today’s perspective. Provides details on all treatments for AE.
Monthly Zoom Support Groups For Patients and Caregivers
Caregiver Monthly Zoom Support Group
The next monthly meeting will take place on August 10th at 6 pm PST/9 pm EST. The IAES Caregiver Support Group takes place on the 2nd Thursday of each month. This is a ‘safe space’ where caregivers can build relationships/friendships with others who are “walking that walk”, share/vent, and receive the support and direction they so richly deserve.
AE Caregivers have a variety of unique challenges that are different from the AE Warrior’s. Often they feel alone and need to be able to share their concerns with others who are on that same journey. Sometimes hearing a chorus of ‘Me Too!’ can have great healing power of its own. Additionally, some of you may qualify for services you are unaware of that could assist or solve a challenge you (or your loved one) are having. As topics are discussed, your hostess, Mari Davis, will direct you to available solutions, services and supports.
Your Hostess, IAES Support Services Coordinator Mari Wagner Davis, has 30 years of experience as an accredited Nurse Case Manager. Mari’s professional career prior to becoming ill with Autoimmune Encephalitis was to locate and arrange for the support services needed for patients when released from the hospital to rehabilitation or home.
The next monthly #AETuesdayTries Zoom meet-up will take place on August 29th, and will always be the last Tuesday of each month.
“Tuesday Tries” addresses the emotional support and rehabilitation AE patients and caregivers require in recovering from autoimmune encephalitis by building your resilience. The program utilizes science-based exercises from the work of PERMA; Seligman, 2012.
IAES wants to foster your capacity in the belief that better days are ahead! “Tuesday Tries” is about practicing a strengths-based approach by “normalizing the try;” celebrating critical milestones in the recovery and care of AE patients and caregivers in order to build a more resilient network of care.
A workbook organizer, “Growing Your Resilience” has been created to accompany the #AETuesdayTries program and is located on the ‘Apps and Tools for AE Warriors’ page in the section: ‘Building Your Resilience’ on the IAES website under the ‘For Patients’ tab. A link to download the organizer is also provided within your e-mail confirmation when you register.
Join AE patients and caregivers of all ages and stages in their AE journey. Receive insights and encouragement from others and celebrate your critical milestones in recovery and care while building a more resilient personal AE network!
Your facilitator, Tessa McKenzie, IAES’ Chief Resilience Officer, is a life coach and studies “resilience” through her private practice, Envisage Vocation Creation and work with Johns Hopkins University’s Life Design Lab. Join Tessa and other AE patients and caregivers who are ready to “Share Your Try Tuesdays”. Tessa will provide prompts for the reframe of perceived failures as well as peer-to-peer validation of “wins” and opportunities for relationship building.
AE Studies and Clinical Trials
The ExTINGUISH Trial
This is the first-ever Clinical Trial for a promising new drug, Inebilizumab, to treat anti-NMDA receptor encephalitis, and will be funded by the National Institutes of Health (NIH).
This trial is actively recruiting. International Autoimmune Encephalitis Society is honored to be supporting the ExTINGUISH trial along with Autoimmune Encephalitis Alliance and The anti-NMDA Receptor Encephalitis Foundation.
Main Inclusion Criteria (in part)
Enrollment is limited to 116 newly diagnosed patients with a confirmed diagnosis of anti-NMDAR Encephalitis who are 18 years or older. Patients must have received at least 3 days of methylprednisolone 1000 mg IV or equivalent corticosteroid within 30 days prior to randomization (Day 1). In addition, patients must have received EITHER of the following treatments within 30 days before randomization.
- IVIg, at a minimum dose of 2 g/kg
- Plasma exchange or plasmapheresis, with a minimum of 5 treatments. NOTE: These treatments may be provided during the screening period, but must be completed prior to randomization.
mRS of ≥3 at the screening visit, indicating at least moderate disability. Ability and willingness to attend study visits and complete the study.
The IGNITE Study
Drs. Emmanuel Mignot and Sergio Muñiz-Castrillo and their research group at Stanford University in California have requested IAES’s help in recruiting autoimmune encephalitis patients for The IGNITE study. This study aims to investigate the genetic predisposition to autoimmune encephalitis and related disorders. Patients must have an identified antibody to participate. The patient may have an active case or be in remission. This exciting study includes patients of all ages and all antibodies. Patients outside of the United States will need the physician who diagnosed them, usually a neurologist, to contact Dr. Muñiz-Castrillo directly. No travel is involved. Saliva and blood kits will be sent to you in the mail and can be returned by mail or dropped off at named participating pharmacies.
Your participation will help uncover that answer and your act of advocacy will eventually enhance lives! The first step to take is to fill out and submit the screening survey below.
Seronegative/antibody-negative patients can play an active advocacy role by distributing the IGNITE study flyer to their diagnosing doctor, and asking that it be posted at the infusion center you use, as well as hospitals and clinics you visit.
Sharing the flyer on your social media platforms will assist us in getting the highest level of participation possible.
AE Trivia Playing Cards
The perfect companion for patients, caregivers & therapists
We appreciate the National Organization of Rare Diseases’ (NORD) enthusiastic support in recommending this groundbreaking product.
AE Warrior Store
Shop for AE Bling and Raise Awareness
Check out the two new t-shirt designs at the Autoimmune Encephalitis Warrior Store, the “Don’t Quit/Do IT #AEWarrior” and the colorful retro #AEWarrior design.
AE Warrior Store products proclaim the bravery and fighting spirit it takes to fight AE and regain your health. Shirts, hoodies, hats, puzzles, mugs, and gift items make this your one-stop shop for patients, caregivers, and friends who have a vested interest in raising awareness for Autoimmune Encephalitis. Designs can be transferred to any product you prefer. The proceeds of your purchase will immediately support Autoimmune Encephalitis patients, caregivers, and families who are walking this difficult journey.
IAES holds the trademark for #AEWarrior, AE Warrior, and Autoimmune Encephalitis Warrior and is the creator of these phrases. Proceeds also go to support research that may one day lead to a cure.
Don’t forget to #GiveAtCheckOut if you purchase your gift through PayPal! (See: Shop and Support IAES Through PayPal’s #GiveAtCheckOut program below).
The proceeds of your purchase will immediately support Autoimmune Encephalitis patients, caregivers, and families who are walking this difficult journey. Proceeds also go to support research that may one day lead to a cure.
Shop & Support IAES Through PayPal’s
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.
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.
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.
On June 16th, 2022, the International Autoimmune Encephalitis Society and Tabitha Orth, IAES President, and Founder, officially became the 7,315th “point of light”. The award was founded by President George H.W. Bush in 1990.