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the herd newsletter logo bi monthly - THE HERD June 2019~ 2nd edition

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

Selected Highlighted News in the field of Autoimmune

Encephalitis June 2019 2nd edition

In this Issue~

TMost Popular Article of the Month: Management of AE in Adults and Children Literature Review

  • Upcoming Events: Texas, London
  • Most Popular IAES Printable Handout: AE is Refractory to anti-psychotic Medications  
  • Most Shared Post: AE Treatment Table, Dose, Side effects
  • Most Listened to Podcast: The Psychological Toll Rare Diseases can have on Siblings
  • Clinician’s Corner: Jeri Tikare Updates IAES on his Doctoral thesis Research Results
  • Open Access Research: Evaluation of seizure treatment in anti-LGI1, anti-NMDAr, and anti-GABAbR encephalitis
upcoming events - THE HERD June 2019~ 2nd edition

Autoimmune Encephalitis Day of Strength

Texas Children Day of strength - THE HERD June 2019~ 2nd edition

IAES is delighted to support the 2nd Annual Texas Children’s Hospital (TCH) Family Day of Strength event that will be held in Houston on July 27th from 11:30 to 5 pm. The group is led by Dr. Eyal Muscal. 

Capture - THE HERD June 2019~ 2nd edition

Tue 16 Jul 2019 from 9:25 am to 17 Jul 2019 at 7:00 pm. Location: London, Royal Society of Medicine. Autoimmune encephalitis, presentations and management from Neurological, Psychiatric, and Neuropsychological perspectives.

Most Popular Article of the Month~


systematic literature review - THE HERD June 2019~ 2nd edition

Management of antibody-mediated autoimmune encephalitis in adults and children: literature review and consensus-based practical recommendations.

IAES would like to thank the Italian Working Group on Autoimmune Encephalitis for their first and very helpful attempt to spread a shared approach to Neuronal Surface Antibodies in antibody-mediated autoimmune encephalitis in adults and children.

AE is refractory to anti psychotic medications - THE HERD June 2019~ 2nd edition
IAES Treatment side effects dose - THE HERD June 2019~ 2nd edition

This Table reviews the treatments in autoimmune encephalitis, Dose, Frequency, Side Effects and what screening and monitoring physicians do for their patients.

podcast listen - THE HERD June 2019~ 2nd edition

The Psychological Toll Rare Diseases Can Have on Healthy Siblings

Do you have a child with autoimmune encephalitis? Do they have a brother or sister?

The emotional impact a rare disease can have on siblings of children with these conditions can be significant. A sibling voices survey evaluating the psychological effects of growing up with a sibling with severe epileptic encephalopathies presented at the European Congress on Epileptology last year suggests these children may be as risk for anxiety or depression.

Listen to this 18-minute interview with Dr. Lauren Schwartz, a psychologist at the Rehabilitation Medicine Clinic at UW Medical Center, about the study, what it found, and what parents should take away from it

health clinic 34 e1559698109921 - THE HERD June 2019~ 2nd edition

Clinician’s Corner

Jeri Tikare Updates IAES on his Doctoral Thesis Research Results


Some months ago, I advertised my doctoral thesis research which was regarding the experience receiving a diagnosis of encephalitis and the impact of this experience on adjusting to the diagnosis. This research has now been completed and I wanted to share the main findings with the groups that so kindly let me advertise the research, to those who were interested in participating but unfortunately were not eligible, and to the participants who gave their time to participate.

Six participants took part in the research and the data was analyzed using interpretative phenomenological analysis. Three themes emerged from the data. The first theme was given the title ‘Being on a wild goose chase- challenges with getting the diagnosis’. This theme is a metaphor for the experiences of an enduring pursuit towards getting a diagnosis. It confirms the complexity of encephalitis and the challenges posed in prognosis and treatment. The second theme was given the title ‘The emotional roller coaster experience’. This theme is a metaphor for the impact of the journey to diagnosis on emotional well-being, with there being many high and low points, generally representing a challenging experience. The third theme highlights the significance of information and of others within the journey. The findings suggest that making sense of the diagnosis of encephalitis is a complicated and difficult process, and there are clinical implications drawn about the potential of a paradigm shift in the approach to uncertainty within the medical curriculum. The findings also highlight the provision of information in different formats, endeavoring to carry patients along on every step of the way during the journey towards diagnosis. The findings also highlight the issue of admission of brain-injured patients onto mental health wards, with a physical health condition. This highlights the need for appropriate treatment from those who fully understand the diagnosis and its implications.

I would like to thank everyone for taking time to contribute to my research in various ways.

Many thanks

Jeri Tikare


image 15 - THE HERD June 2019~ 2nd edition

Evaluation of seizure treatment in anti-LGI1, anti-NMDAR, and anti-GABABR encephalitis

A group of researchers from the Netherlands investigated the difference in efficacy between immunotherapy and antiepileptic drugs (AEDs) as treatment for seizures in patients with autoimmune encephalitis (e.g. anti-LGI1, anti-NMDA receptor and anti-GABABR encephalitis).

Seizures occur frequently in autoimmune encephalitis. In this study of 153 patients with autoimmune encephalitis, 110 of patients manifested with epileptic seizures. Most of these patients received immunotherapy (101 patients) and AEDs (100 patients). Nine patients were treated only with AEDs.

Looking at the effects of AEDs, most seizures were refractory (did not improve/stop) to AEDs even after changing dosage or treatment regimen. In some patients, the use of AEDs was followed by serious manifestations: behavioural changes, psychosis and suicidal thoughts. AED had no influence on faciobrachial dystonic seizures (FBDS) (type of seizures in anti-LGI1 encephalitis). Being on AEDs didn’t prevent relapses which were resolved with immunotherapy within days or weeks.

Comparing the effects of immunotherapy with those of AEDs, immunotherapy resulted in seizure freedom faster (28 days from the start of the treatment) than AEDs (59 days from the start of the treatment) and also more often (53% of patients) than AEDs (14% of patients). Patients treated earlier on in disease course with immunotherapy were seizure-free quicker. For example, almost half of the patients with anti-LGI1 encephalitis became seizure-free within a week after immunotherapy, while they had been resistant to AEDs for longer time.

Overall, 89% of all patients with seizures became seizure-free. Only one patient developed epilepsy after acute stage of encephalitis. Most patients stopped using AEDs successfully after resolution of encephalitis.


mission2 - THE HERD June 2019~ 2nd edition

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.

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.

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