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

Supportive assistance guide for your AE Journey~

June 2023 1st Edition

•  *Children’s Corner (for all ages): The Leading Role of Brain and Abdominal Radiological Features in the Work-Up of Anti-NMDAR Encephalitis in Children: An Up-To-Date Review, Stay Positive Word Search
• *ABI Rehabilitation: 40+Things To Put in A Calm Down Kit For Kids
• *Helpful Tips for the AE Warrior:  Book: To Add A Miracle: A Mother’s Journey (Fall) into the World of Autoimmune Encephalitis and Autism
• *Most Popular Visuals: How Acquired Brain Injury Affects Daily Life, The Damaged Brain
• *Featured AE Article: Suicidal Thoughts and Behaviors in Anti-NMDA Receptor Encephalitis: Psychopathological Features and Clinical Outcomes
• *Video: If You Could Share 1 Thing with Your Neurologist, What Would It Be?
• *Clinician’s Corner: A Novel Classification Model Based on Cerebral 18F-FDG Uptake Pattern Facilitates the Diagnosis of Acute/Subacute Seropositive Autoimmune Encephalitis
• *Open Access: Autoimmune Encephalitis Criteria in Clinical Practice
• *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 and Amazon Smiles

Children’s Corner

The Leading Role of Brain and Abdominal Radiological Features in the Work-Up of Anti-NMDAR Encephalitis in Children: An Up-To-Date Review

Stay Positive Word Search

Word Search puzzles are a wonderful exercise to do for brain injury rehabilitation from Autoimmune Encephalitis. Re-learn and re-train your brain by developing problem-solving, attention span, organizational and analytical skills.  

IAES has a wonderful Rehabilitation cognitive exercise page that outlines exercises you can implement at home. Free cognitive functioning worksheets, word search puzzles, and adult coloring with an AE Warrior theme are all available to help with your rehabilitation. Younger patient projects are located on our Children’s Corner webpage.

ABI Rehabilitation From AE

40+Things To Put in A Calm Down Kit For Kids

A Coping Skills Toolbox is a kit that you create to help your child calm down when they are upset, anxious or worried. In order to get the most benefit from this, you should create this kit before an issue occurs. When your child experiences anxiety, then they can pick out an item from their Coping Skills Toolbox. This is one of my favorite ways to help kids learn to calm their anxiety.

Helpful Tips for Patients & Families

Book: To Add A Miracle: A Mother’s Journey (FALL) into the World of Autoimmune Encephalitis and Autism

To Add A Miracle details with raw honesty, sprinkled with moments of humor and laughter, the dark and light shadows of the Jablon family’s journey; the story also highlights the tremendous strength of Yehuda’s siblings and selected “messengers of miracles” along the way.

With no filters, the story tells the author’s emotional journey as a mother in distress, facing piles of despair, culminating in a greater acceptance of the unacceptable, and a powerful recognition of the miracles that Yehuda has added to her family’s life.

While many books have been written highlighting the challenges of raising a child with disabilities, autoimmune encephalitis is a recently discovered and often misunderstood illness with a shocking onset.

The writing of To Add A Miracle was fueled by the author’s intense desire to spread awareness and hope, to strengthen mothers, fathers, families, and medical practitioners, as they bravely journey toward recovery or increased acceptance and strength.

Rebecca Jablon, IAES member and author of To Add A Miracle, tells the story of her sudden and dramatic fall into the world of autoimmune encephalitis, and resulting diagnosis of autism for her son, Yehuda.

• How can a mother accept an unknown or rare diagnosis?
• How can she grapple with an experimental and even further unknown treatment plan?
• How can a mother not throw up her hands in total despair when top neurologists eventually throw up their hands?
• How can she survive when she screams out, yet no one can answer, “What suddenly happened, overnight, to my five-year-old son?!!”

No stranger to the world of rare illnesses, Yehuda’s sudden overnight descent into the unknown rocked the author’s family. Who or What had stolen her son’s words, skills, and identity?

Most Popular Visuals

How Acquired Brain Injury Affects Daily Life

The Damaged Brain

Featured AE Article

Suicidal Thoughts and Behaviors in Anti-NMDA Receptor Encephalitis: Psychopathological Features and Clinical Outcomes

Results:

From a total sample of 120 patients who fulfilled the diagnostic criteria for definite ANMDARE, 15 patients (13%) had suicidal thoughts and behaviors during the acute phase of the disease. All 15 of these patients experienced psychosis and had suicidal ideation with intention. Three patients engaged in preparatory behaviors and seven carried out suicidal self-directed violence. Psychotic depression and impulsivity were more frequent among those patients with suicidal thoughts and behaviors than among those without any form of suicidality. Four patients engaged in self-directed violence during hospitalization. Remission was sustained in 14 of 15 patients, with suicidal ideation and self-directed violence persisting during follow-up in only one patient.

Conclusions:

Suicidal thoughts and behaviors are not uncommon during the acute phase of ANMDARE. On the basis of our sample, the persistence of these features after immunotherapy is rare but may be observed. A targeted assessment of suicidal risk should be strongly considered in this population.

Video

If You Could Share 1 Thing with Your Neurologist, What Would It Be?

“If you could share one thing with your Neurologist, what would it be?”

This was the question “AE Tuesday Tries”, moderator Tessa McKenzie, IAES’ Chief Resilience Officer, ask Autoimmune Encephalitis patients and caregivers on one of her weekly Tuesday Twitter and Facebook posts. Responses poured in that were so insightful, we decided to create this video as a positive step forward in relationship-building with our doctors. by “normalizing the try.”  Please share this video to raise awareness and subscribe to the IAES YouTube channel 

Tuesday Tries gives members the time and tools to reflect on their Autoimmune Encephalitis journey, identify best practices in healing, and move forward better poised to leverage their strengths. Tessa provides prompts for reframing perceived failures, peer-to-peer validation of “wins, ” and opportunities for relationship building. IAES’ “Tuesday Tries” meets on Zoom on the last Tuesday of every month. The link to register for #AETuesdayTries is included in this video description.

Clinician’s Corner

A Novel Classification Model Based on Cerebral 18F-FDG Uptake Pattern Facilitates the Diagnosis of Acute/Subacute Seropositive Autoimmune Encephalitis

Open Access

Autoimmune Encephalitis Criteria in Clinical Practice

Researchers at the Mayo Clinic who specialize in Autoimmune Encephalitis reviewed all cases of patients who had received a diagnosis based on the criteria set down in the gold standard paper, A Clinical Approach to Diagnosis of AE published in 2016. 538 patients were included in this paper. The goal was to assist in diagnostic decision-making.

The study was not designed to address the specificity of criteria among a control cohort, in our clinical experience, the definite AE criteria are highly specific, which is assured by the “reasonable exclusion of other diagnoses” requirement. In addition, they did not find alternative diagnoses among the cases where there was less certainty (possible, probable, or not meeting 2016 criteria). They did find that some modification of the criteria could improve the inclusion of AE-specific IgG-positive patients with seizure-only presentations, brainstem encephalitides, and perhaps some atypical presentations. This would ensure broader inclusion of affected patients in relation to epidemiologic studies, clinical trials, treatment guidelines, healthcare policies, and insurance rules developed in the future.

From their experience, the most common presentation beyond those specified in the AE guidelines was isolated seizures (12%), similar to the frequency previously reported for isolated seizures in general for LGI1 encephalitis (13%) and anti–NMDA-receptor encephalitis (12%). In their experience, LGI1 encephalitis presents with seizures in the absence of the full clinical picture of limbic encephalitis in one-third of cases (and thus would not be included in AE criteria from 2016). Where there is uncertainty, before an immune therapy trial, we emphasize the importance of reasonable exclusion of other reversible disorders, such as neoplastic, infectious, toxic, and metabolic disorders, so as to leave 2 main possibilities remaining: an immune-mediated disorder or a neurodegenerative diagnosis with limited treatment options. Patients should be followed up expeditiously to determine whether there is an objective response to immune therapy and treatment promptly tapered and discontinued where there is none.

In general, in this study, we diagnosed autoimmune encephalopathy in 1 in 5 of all patients assessed. The sensitivity for possible AE could be improved by including some well-recognized seropositive “seizure-only” presentations. The 2016 AE guidelines could be modified to include isolated new-onset, frequent, focal seizures among the clinical presentations while retaining the other supportive criteria and requirement to exclude competing diagnoses. Similarly, a category could be added to current AE guidelines to include brainstem encephalitides, especially if seropositive for relevant neural autoantibodies, though the presentations are sufficiently diverse, distinct, and nascent in their recognition, that development of a separate brainstem-specific set of criteria could also be considered. Additionally, a separate category of “autoimmune psychiatric” diagnoses seems unnecessary.

Monthly Zoom Support Groups For Patients and Caregivers

Caregiver Monthly Zoom Support Group

The next monthly meeting will take place on June 8th 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.

#AETuesdayTries

The next monthly #AETuesdayTries Zoom meet-up will take place on June 27th, 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

Doctor Recommended

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 

#GiveATCheckOut

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 16^th, 2022, the International Autoimmune Encephalitis Society and Tabitha Orth, IAES President, and Founder, officially became the 7,315^th “point of light”. The award was founded by President George H.W. Bush in 1990.