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theherd - THE HERD August 2021 2nd edition

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

Selected Highlighted News in the field of Autoimmune Encephalitis~ August 2021 1st Edition

In this Issue~

 

  • *Announcements: The Well-Being Gratitude Journal, #AETuesdayTries & Growing Your Resilience Organizer, AE Study in Australia, New Engagement Program for Patients and Caregivers
  • *Children’s Corner (for all ages): Four-year-old anti-N-methyl-D-aspartate receptor encephalitis patient with ovarian teratoma: A case report, Summer Maze worksheet
  • *ABI Rehabilitation: 10 Exercises to Improve Balance after a Brain Injury, Recognition of the power of music in medicine is growing, Resilience word scramble
  • *Useful Tips for the AE Warrior: Are you Eligible for a Homestead Tax Exemption?
  • *Most Popular Visual Downloads: Stop. Someone in this house has a weak immune system sign, When “I” is Replaced by “We”
  • *COVID-19’s Impact on the AE Community: Covid immunity is about more than antibodies — here’s what else helps protect you, Manifestations in COVID-19 Patients: A Meta-Analysis
  • *Featured AE Article: Neurofunctional outcomes in patients with anti-leucine-rich glioma inactivated 1 (LGI1) encephalitis
  •  *Clinician’s Corner: Autoimmune Encephalitis Related Seizures and Epilepsy: Diagnostic and Therapeutic Approaches
  • *COVID-19 Clinician’s Corner: Considerations for causality assessment of neurological and neuropsychiatric complications of SARS-CoV-2 vaccines: from cerebral venous sinus thrombosis to functional neurological disorder
  • *Open Access: Anti-N-Methyl-D-Aspartate Receptor Encephalitis: A Detailed Review of the Different Psychiatric Presentations and Red Flags to Look for in Suspected Cases
  • *AE Trivia Cards: The single most important educational/rehabilitation tool for AE
  • *AE Warrior Store: See our new AE Wingman and hat collections
  • *Shop & Support IAES: Sign up for PayPal’s #GiveAtCheckOut and Amazon Smiles

Annoucements

 

The Well-Being Gratitude Journal

 

Gratitude Journal-IAES

IAES is pleased to provide you with this wonderful supportive tool appropriate for anyone touched by Autoimmune Encephalitis. This guided gratitude journal is a science-based practice for improving you health and happiness. The Well-Being Warrior Journal, written by Tessa McKenzie, IAES Chief Resilience Officer, and Tabitha Orth, IAES President, prompts you to reflect on what you are grateful for each day. 

Utilize the journal by challenging yourself to a 21 day commitment described. Spend two minutes a day scanning the world for three new things you’re grateful for over a 21-day period.  We instinctively scan our environment for threats. This powerful exercise trains your brain to scan the world in a new pattern of scanning for positives. It’s the fastest way to teach optimism.

We are all capable of learning new behaviors and changing our brain patterns. Research has shown that a person with a low-level of pessimism on day 1 of this 21-day exercise will admit to feeling a low-level of optimism by day 21. When dealing with a life challenge as overwhelming as AE, it is important to take care of your mental health, feel supported in your ability to manage the crisis and feel empowered and truly resilient.  

The Journal has a left hand margin width for a 3-hole punch so it can be inserted into a notebook. Coloring has been shown through research to mitigate symptoms of physical and emotional distress and is a recommended rehabilitation activity for AE patients. Color in the cover design to personalize your journal while relaxing into a pleasant past time. 

#AETuesdayTries

 

Our new program “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.

The next monthly #AETuesdayTries zoom meet-up will take place August 31st and will always be the last Tuesday of each month.  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 Study Seek Your Participation

Dr Mastura Monif-Victoria-Australia

AE Study Seeks Your Participation

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

 

Patient Engagement Group

 

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Here’s your opportunity to let your voice be heard and advocate for a better future for AE patients and caregivers. Participation is encouraged no matter where you are in the world. 
The Monif Group in Australia is beginning a community engagement program where they hope to engage with members of the public from around the world who have a lived experience of Autoimmune Encephalitis, either as a patient or a caregiver, and form partnerships with researchers within their school.
These valuable partnerships provide them with a unique perspective on the health conditions they research, and allow patients/carers to contribute to a shared goal of improving outcomes for patients with Autoimmune Encephalitis. It is intended that the program facilitates engagement between consumers and researchers in a flexible, respectful way. This means that the process is largely guided by the consumers, including on their terms, within their available schedules and within the scope of what they are comfortable to contribute.

If anyone would like to be involved they can either email NeuroimmunologyResearch@monash.edu or you can complete an expression of interest on this form. contact Tiffany Rushen, the research coordinator for the project, if you have any questions.

Children’s Corner

 

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Four-year-old anti-N-methyl-D-aspartate receptor encephalitis patient with ovarian teratoma: A case report

 

CASE SUMMARY

 This case report describes the successful treatment of anti-N-methyl-D-aspartate (NMDAR) encephalitis by early laparoscopic ovarian cystectomy and immunotherapy in a 4-year-old female child. And to the best of our knowledge, this detailed case report describes the youngest patient to date with anti-NMDAR encephalitis who underwent laparoscopic ovarian cystectomy.

CONCLUSION

Although the younger the patient is, the less likely a tumor will be detected, we still emphasize that all patients with suspected or confirmed anti-NMDAR encephalitis should be screened for ovarian tumors if possible. Prompt initiation of immunotherapy and tumor removal are crucial for good outcomes.

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Summer Maze Worksheet for AE Warriors Young and Old

 

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AE Warriors have a brain injury or damage from the assault on their brain. We need to re-learn and re-train our brains. Executive functioning (the CEO of your brain), is the complex set of cognitive processes we use to make decisions, plan, make comparisons, and organize information. Executive functioning is also important for language, social skills, and computational abilities.

Solve this Summer maze themed worksheet as part of your rehabilitation from Autoimmune Encephalitis. We are providing 3 versions with levels of difficulty ranging from ‘medium’, ‘hard’ to ‘super hard’. 

ABI Rehabilitation From AE

 

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10 Exercises to Improve Balance after a Brain Injury

 

Depending on the severity of the brain injury and where in the brain the injury occurred from your AE, the ability to balance may be affected. It is important to address balance issues with your doctor, who may refer you to a physical therapist for rehabilitation to decrease the risk of falls and other associated injuries, such as broken bones.

Balance Problems After Brain Injury: An Overview.

·        How a Brain Injury Affects Balance

·        How to Improve Balance After Brain Injury

·        5 Seated Exercises to Improve Balance

·        5 Standing Exercises to Improve Balance

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Recognition of the Power of Music in Medicine is Growing

 

There have been several decades of research on how music can aid in brain recovery from injury. Music can help individuals express themselves, and there is a slowly growing understanding of how music can aid in memory, cognition and motor control. It is believed to aid in developing neural pathways. It can also aid in relaxation and expression of emotions.

Resilience Word Search Puzzle

 

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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.

IAES has created this word search that feature hidden keywords that will encourage and aid you in focusing on your resilience and recovery.  We hope you feel the love, encouragement and support as you solve this puzzle and realize you are not alone on your journey and that you are resilient.

Challenge yourself with this puzzle and others that you will find as free downloads on our website. Then look through the puzzles in the AE Warrior Store that have been created with art by fellow AE patients. You are sure to become inspired and challenged in your recovery efforts. 

Useful Tips for Patients & Families

 

Are you Eligible for the Homestead Tax Exemption?

 

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Homestead tax exemptions shelter a certain dollar amount or percentage of home value from property taxes. They’re called “homestead” exemptions because they apply to primary residences, not rental properties or investment properties. You must live in the home to qualify for the tax break. Some states exempt a certain percentage of a home’s value from property taxes, while other states exempt a set dollar amount.

Many states offer a Homestead exemption to individuals who are disabled. This reduces the amount of taxes that are owed on the property. It usually requires your doctor to compete a form and documentation be provided. Each state is different, so each person should look up what their state provides.

Most Popular Download

 

Stop. Someone in this House Hs a Weak Immune System

 

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Some of you live in “hot spot” areas for COVID-19 and the Delta variant and are being very mindful we are sure. This sign may come in handy. Tape it in a front window or on your front door as an added layer of protection. 

When “I” is Replaced by “We”

 

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COVID-19’s Impact on the AE Community

 

Covid immunity is about more than antibodies — here’s what else helps protect you

 

This easy read explains how the COVID-19 vaccinations work and how effective they are. It talks specifically about the J & J vaccination. 

There’s been a lot of news around research out of New York University that suggests the Johnson & Johnson Covid vaccine is less effective against the delta variant, because it triggers fewer antibodies. And many are questioning whether, several months out, people’s antibody levels will wane and require a booster shot.

Antibody levels are one piece of the puzzle when it comes to fighting Covid, but they don’t tell the whole story when it comes to immunity.

This article explains what you need to know.

Manifestations in COVID-19 Patients: A Meta-Analysis

This study demonstrates that neurological manifestations are significantly reported in COVID-19 patients. The most common neurological manifestations in COVID-19 patients were headache, fatigue, olfactory dysfunction, gustatory dysfunction, vomiting, nausea, dizziness, myalgia, seizure, cerebrovascular diseases, sleep disorders, altered mental status, neuralgia, arthralgia, encephalopathy, encephalitis, malaise, confusion, movement disorders, and Guillain–Barre syndrome depending upon the individual, which indicates the involvement of CNS as well as PNS.

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Featured AE Article~

 

Neurofunctional outcomes in patients with anti-leucine-rich glioma inactivated 1 (LGI1) encephalitis

 

Objective: To evaluate the cognitive and neurofunctional outcomes in patients with anti-leucine-rich glioma inactivated 1 (LGI1) encephalitis.

Methods: A cohort follow-up study was performed after a median of 33 months (range 6-78) from disease onset to the last follow-up in patients diagnosed with anti-LGI1 encephalitis, to assess the neurofunctional outcomes using modified Rankin Scale (mRS), activities of daily living (ADL), neuropsychiatric inventory (NPI) and modified telephone interview for cognitive status (TICS-M). Remote symptomatic seizure and clinical relapses were also recorded. The clinical, laboratory features, and treatment responses that characterize the disability were analyzed.

Results: The results showed that 81 of 86 (94.2%) patients with anti-LGI1 encephalitis were successfully followed up, while eight (9.9%) died after discharge. Among the 73 survivors, clinical relapses occurred in 18 (24.7%) patients, and those with relapses were at a higher risk of developing remote symptomatic seizure (p = .019). Although 85.2% of the patients became functionally independent (mRS ≤2), the sequelae of symptomatic seizure, neuropsychiatric symptoms, and cognitive deficits were found in 11.0%, 21.9%, and 39.7% of the patients, respectively. Residual cognitive deficits primarily occurred in the elderly subjects as well as those with symptoms of memory deficit, psychiatric disorders, sleep disturbance, disturbance of consciousness at diagnosis, and higher CSF protein levels.

Conclusions: Although most patients survived and became functionally independent, a subset of patients could not return to all premorbid activities. They may have clinical relapses or suffer from remote symptomatic seizure, neuropsychiatric symptoms, and cognitive impairment.

Clinician’s Corner

 

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Autoimmune Encephalitis Related Seizures and Epilepsy: Diagnostic and Therapeutic Approaches

 

The identification of neural autoantibodies in patients with new-onset seizures of unknown etiology has led to the concept of acute symptomatic seizures secondary to Autoimmune Encephalitis (ASSAE) and Autoimmune-Associated Epilepsy (AAE). In these patients, anti-seizure medication (ASM)-resistant seizures occur as an early and prominent feature. When combined with other symptoms suggestive of immune-mediated seizures, urgent consultation with neurology is recommended. Early treatment with immunotherapy can drastically alter the course of the disease. First-line immunotherapies include intravenous steroids, intravenous immunoglobulin, and PLEX. In the case of insufficient response, cyclophosphamide and rituximab can be considered appropriate second-line treatments. Treatment also includes adjunct ASM therapy and non-CNS tumor resection (if paraneoplastic etiology is suspected) when found on screening.

As we continue to advance our knowledge in AAE and ASSAE, we need to clarify its definition and diagnostic criteria and promote recognition of relevant symptoms (detailed in Table 2) that would lead to early neurology referral and timely diagnosis. The recently developed APE2 and ACES scores have helped build a foundation for diagnosing ASSAE and AAE; however, there remains much ambiguity.

Supplemental video is included at the end of the paper. Downloadable .mp4

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COVID-19 Clinician’s Corner

 

Considerations for causality assessment of neurological and neuropsychiatric complications of SARS-CoV-2 vaccines: from cerebral venous sinus thrombosis to functional neurological disorder

 

Neurological and neuropsychiatric adverse events have been reported in clinical trials of various SARS-CoV-2 vaccines and, more often, in open-label monitoring. In many cases, no definitive evidence has yet supported causality. Despite this, there are recognized rare adverse events that have been causally linked to SARS-CoV-2 vaccines, for example, VITT. The necessary ongoing surveillance work is in progress; however, the current advice that the benefit of the vaccination outweighs the risk appears to be accurate from a neurological standpoint. Heightened reporting of adverse events, for example, via the Yellow Card system, may be in part due to increased pharmacovigilance.

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Anti-N-Methyl-D-Aspartate Receptor Encephalitis: A Detailed Review of the Different Psychiatric Presentations and Red Flags to Look for in Suspected Cases

 

Physicians trying to familiarize themselves with this diagnosis, this is a good place to start. The review included a general scheme that covers almost all aspects of the psychiatric presentation, similarities, and differences in contrast to other differential diagnoses, in addition to clinical pearls that aid diagnosis. However, this paper did not discuss the different ways this disorder presents in pediatrics; hence, this remains an area future reviews might be more inclusive of.

See Image figure 1 : Contrast in the signs and symptoms of anti-NMDAR encephalitis, schizophrenia, and other primary psychiatric disorders .

AE Trivia Playing Cards

The perfect companion  for patients, caregivers & therapists

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Doctor Recommended

 

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

 

New Arrivals ~ The AE Wingman Collection

 

New arrivals at The AE Warrior Store. We are pleased to present ~The AE Wingman Collection.  Get some  swag for your spouse, partner, BFF, caregiver, or advocate that is sure to bring a smile and remind them of how proud you are of their fighting spirit and dedication to helping you on your AE journey.

Any AE Warrior knows that we are NOTHING without our #AEWingman’s support and guidance. Our Wingman is the person who has been right by our side encouraging us every inch of our AE journey.

The moniker “AE Wingman” should invoke a sense of pride and reaffirmation of the courage and determination it has taken to advocate so long and hard to help us regain health.

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

 

Have you wanted to support IAES, Autoimmune Encephalitis awareness, and the AE Warrior that you love?

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 of an opportunity to give $1 to IAES.

Simply go to your PayPal account and select “set favorite charity”, and choose International Autoimmune Encephalitis Society.  When you make a purchase and check out, an option comes up that asks if you would like to give $1 to IAES? 

Help create the positive change you envision for the AE Community by donating your change.

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Get that great deal online and support IAES at the same time!

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.

This simple act of kindness, will support the work we do and advance our ability to service the community.

Smilematic, is a handy tool that will automatically redirect you to smile.amazon.com when you are shopping so you never have to worry about forgetting to type it in to ensure benefits go to IAES.

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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.

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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.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Autoimmune Encephalitis Trivia Playing Cards

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