Don’t Be Left Behind. Keep Up With THE HERD!
Supportive assistance guide for your AE Journey~
September 2023 2nd 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, Gratitude Journal For Kids
- *ABI Rehabilitation: Positive Thinking Word Search
- *Helpful Tips for the AE Warrior: AE Trivia Playing Cards
- *Most Popular Visuals: AE Infographic, Urinary Incontinence in Seizures
- *Featured AE Article: Girl, 13, fell in the bathroom and suddenly lost her sight. It was the 1st sign of a rare disease
- *Video: My Month In Hell- Misdiagnosis and Autoimmune Encephalitis
- *Clinician’s Corner: Highly Mutated COVID Strain Can’t Evade Immunity as Feared
- *Open Access: Autoimmune encephalitis during pregnancy: a diagnostic and therapeutic challenge – A systematic review with individual patients’ analysis and clinical recommendations
- *Monthly Zoom Support Groups for Patients & Caregivers: Caregiver Monthly Zoom Support Group, #AETuesdayTries for patients and caregivers
- *AE Studies & Clinical Trial: What is a Clinical Trial Video, Cielo Clinical Trial to Compare Satralizumab with placebo in anti-NMDAr and LGI1 patients, 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
Children’s Corner
Anti-N-Methyl-D-Aspartate Receptor (NMDAR) Encephalitis in Children and Adolescents: A Systematic Review and Quantitative Analysis of Reported Cases
Results
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.
Conclusion
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.
Gratitude Journal For Kids
Gratitude is the expression of appreciation for what one has. Practicing gratitude means making conscious efforts to count one’s blessings and notice the goodness in life.
BEING GRATEFUL…
- Keeps you calm and joyful
- Boosts mood and self-esteem
- Reduces feelings of loneliness and isolation
- Helps develop stronger relationships
- Improves the quality of sleep
- Encourages positivity and optimism
- · Makes life more enjoyable
START EACH DAY WITH A GRATEFUL HEART.
Download this 17-page Journal today.
Find other helpful & supportive activities for children on the Children’s Corner webpage under the ‘For Patients’ tab on the IAES website.
ABI Rehabilitation From AE
Positive Thinking 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.
Helpful Tips for Patients & Families
AE Trivia Playing Cards
Have fun learning about AE while you re-learn and re-train your brain with AE Trivia Playing cards. IAES has created this deck of cards specifically for you and your family to make your AE journey an easier one to bear. The deck answers the 52 most common questions about AE and doubles as a rehabilitation tool. Hailed by AE experts and therapists alike as ‘Brilliant’. Become empowered by increasing your knowledge about AE so you can enhance your ability to advocate for yourself.
Most Popular Visuals
AE Infographic
Urinary Incontinence in Seizures
Featured AE Article
Girl, 13, fell in the bathroom and suddenly lost her sight. It was the 1st sign of a rare disease
Hallie Hale, 13, started seeing and hearing things that weren’t there. It was one of many mysterious signs of anti-NMDA encephalitis.
Video
My Month In Hell- Misdiagnosis and Autoimmune Encephalitis
Listening time: 1 hour 20 min.
IAES member/AE Warrior, Ryann Henn-Hawthorne, shares her personal story of becoming suddenly and dramatically ill. Her courage is on full display as she recounts reporting to a local ER with high anxiety, being put on a psychiatric hold, and her determination to explain what she was experiencing to staff. Meanwhile, Ryann’s family was hopelessly severed from advocating on her behalf as adult patients on psychiatric hold are not seen as being able to make safe decisions for themselves and require a trusted family member to become their medical power of attorney. As seizures and other neurological symptoms became more prominent, and undocumented in her medical file, Ryann and her family fight for her life the best way they knew how.
Although Autoimmune Encephalitis is becoming more well-known in the medical community and patients are receiving an accurate diagnosis more quickly, small rural hospitals are not where you ever want to land when you come down with a rare disease.
IAES wants to extend our thanks to all the residents, fellows, and nurses who recognize AE as a possible culprit and speak up in any way they can to encourage the treating physician to evaluate for this possibility. In Ryann’s case, it was an RN who secretly shared her concerns with Ryann’s Mother. This RN asked that Ryann’s Mother not inform the doctor that they spoke as it would jeopardize her job. There are angels among us, even in the darkest places. Ryann had a secret angel – a gutsy RN who was gravely concerned for her patient.
Clinician’s Corner
Highly Mutated COVID Strain Can’t Evade Immunity as Feared
The new highly mutated COVID variant BA.2.86 does not have a heightened ability to evade the protection of COVID vaccines or immunity from prior infection, new laboratory tests show.
The BA.2.86 variant grabbed the attention of public health officials in recent weeks due to its quick spread across the globe and a large number of mutations. Having so many mutations increased the chance that it would behave differently than previous versions of the virus, possibly making it more dangerous.
Now, experiments conducted by two teams of U.S. scientists show that antibodies from COVID vaccinations or prior infections can recognize and fight off the BA.2.86 version of the virus, CNN reported, noting that the protection may be “perhaps even better” than antibody responses to other currently circulating strains of the virus.
Open Access
Autoimmune encephalitis during pregnancy: a diagnostic and therapeutic challenge – A systematic review with individual patients’ analysis and clinical recommendations
Several reports have described the autoimmune encephalitis (AE) possible onset during pregnancy. In this systematic review, we summarize the available data on the diagnostic and therapeutic approach to AE during pregnancy, highlighting the associated maternal and fetal clinical outcomes. A systematic search of the literature was performed.
AE onset was mainly observed during the first and the second trimester of pregnancy with psychiatric manifestations and seizures as main onset symptoms. CSF analysis showed AE-specific autoantibody positivity in 33 patients (anti-NMDA receptor as the most frequent). EEG generally showed normal findings. MRI revealed pathological findings in less than half of patients. Tumor screening was positive findings in 14 cases. First line immunotherapy (single or combined) was generally employed while second line was administered in a minority of patients. Levetiracetam was the most used antiseizure medication. Cesarean section was performed in 18 women. Most of the women had an excellent early outcome after delivery but 22 showed persistent neurological deficits in long-term follow-up. Fetal outcome was positive in 33 cases whereas 12 cases of fetal death were reported. A logistic regression showed that no variable significantly influenced the odds of good/bad maternal and fetal clinical outcome. Diagnosis and treatment of AE during pregnancy is challenging. The rate of miscarriage in women with AE seems to be higher than the general population. In addition, mothers may show long-term neurological deficits.
Monthly Zoom Support Groups For Patients and Caregivers
Caregiver Monthly Zoom Support Group
The next monthly meeting will take place on October 12th 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 September 26th, 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
What Is A Clinical Trial (5-Minutes)
Cielo Clinical Trial to Compare Satralizumab with placebo in anti-NMDAr and LGI1 patients
Registration is open. If you are 12 years+ with a diagnosis of anti-NMDAr AE, or 18 years+ with a diagnosis of LGI1 AE and symptoms began less than 9 months ago, you may qualify for this rare clinical trial. 10 countries currently participating. A clinical trial doctor with top expertise in AE will oversee your care. Rescue care/standard AE care is given to placebo patients.
The trial aims to show Satralizumab is safe and effective for the treatment of Autoimmune Encephalitis and become FDA-approved. Your participation will improve the lives of all future patients. Help us reach the best outcomes for all. Ask your doctor about this trial.
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
The Brain On Fire design was created by IAES founder, Tabitha Andrews Orth and is copyrighted by the International Autoimmune Encephalitis Society (IAES). The design names many of the most common symptoms experienced in Autoimmune Encephalitis and where in the brain that symptom is controlled. Spread awareness for Autoimmune Encephalitis. The phrase, “Brain on Fire” references a best-selling book written by Susanah Cahalan who has given permission for IAES to use the phrase for this collection.
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
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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.
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.
