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It’s OK, Daddy’s Here

It’s OK, Daddy’s Here

June 7, 2018 | Trystn K. Daley RN, BSN

Recently, I completed a Population Health practicum for my graduate nursing program. As part of the course, I spent 105 clinical hours at a local hospital of which I chose to work with patients diagnosed with autoimmune encephalitis as my population of focus. The aim of the clinical was to look at the health needs of the population and using evidence-based research and collaborative effort with the health care team, design intervention that supports the overall health of the population. I focused on examining diagnostic processes when patients present with initial symptoms.

My career as a clinical RN has mostly consisted of inpatient neuroscience nursing and I chose to work with the AE population due to my special interest in improving outcomes for patients suffering from AE. As I went about the course, I quickly learned that International Autoimmune Encephalitis Society proved to be an excellent resource to myself as a health care clinician and overall a dedicated group of people who work tirelessly to improve the health and lives of patients diagnosed with AE and their families from all over the world.  

My goal was to retrospectively look at what diagnostic tests were being done on patients diagnosed at the clinical site I was working with and to see how those findings lined up to the Lancet Neurology position paper titled, A Clinical Approach to Diagnosis of Autoimmune Encephalitis, written by Dr. Josep Dalmau and his colleagues. This paper guides clinicians to arrive at a diagnosis prior to the antibody status result which can take some time as it is most often sent out of facility and additionally having no antibody present does not eliminate a diagnosis of AE as not all antibodies causing AE are yet known. Evidence strongly suggests that earlier identification and initiation of treatment lead to a better prognosis for the patient thus standardizing diagnostic approach is an important intervention to support improved patient outcomes. Additionally, symptoms of AE mimic other disorders so that is another challenge to arriving at diagnosis that I identified in my research that can affect timeliness of treatment.

Early in my research, while doing an online search for existing community resources for Autoimmune Encephalitis patients, I found and reached out to International Autoimmune Encephalitis Society and was quickly contacted by an administrative team member. The admin team helped answer many of my questions about the issues patients face with being appropriately diagnosed initially as well as the long-term health difficulties that the population experiences. I found the admin team to be very knowledgeable in pointing me in the direction of evidence-based research articles and additionally they were willing to share their own personal experiences in facing an AE diagnosis. That information was most valuable to me as my sole purpose of working towards being a nurse leader is to help people by improving the quality of the care that they receive and to promote better health outcomes.

I was most impressed as I observed the International Autoimmune Encephalitis team working together behind the scenes to address individual needs each day and most days late into the night and in their commitment to providing a supportive place for those newly diagnosed to turn where there is a group of people who truly care and who also deeply understand.

It is with sincere gratitude that I thank International Autoimmune Encephalitis Society for your dedication in not only advancing care and outcomes through educating the public and health care professionals but also in directly addressing the needs for the individuals you work alongside who are facing a diagnosis of AE. As I continue to work towards my professional goal of being a nurse educator and teaching our future generations of nurses, it is my hope that more nurses and providers have the tools and knowledge needed to recognize Autoimmune Encephalitis early on so that earlier diagnosis and intervention is possible. I will carry what I learned from all of you forward with me and close to my heart as a reminder of what we are fighting for.  


Donate to Support IAES and our Life Saving Mission


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”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, 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.

MAY IS MENTAL HEALTH MONTH

MAY IS MENTAL HEALTH MONTH

May 30, 2018 | Barbara Vujaklija, RN

 

Although Autoimmune Encephalitis (AE) is a neurological disorder, we all know that there is a large mental health aspect to the illness. From mild psychosis to patients who end up in the Psychiatric system instead of the medical system. We all have our stories to tell, some suffer from mental health issues more than others depending on the type of autoimmune encephalitis one has and the level of severity.  With adults, psychosis is a prominent symptom at the beginning of the disease and with children seizures play a dominant role in symptom onset.  Recent research has uncovered that genetics plays a role in LGI1 limbic encephalitis.  The type of antibody you have has distinct symptoms and syndromes that occur.  

All I know for sure is that most of us as caregivers or warriors have dealt with some form of mental health issue. According to the National Institute for Mental Health (NIMH) Fact sheet on First Episode Psychosis (FEP), the word Psychosis is used to describe conditions that affect the mind, where there has been some loss of contact with reality. Psychosis can be a symptom of a mental illness or a physical condition. There lies a major problem for us neurologically challenged warriors as so many uneducated doctors make the mistake of assuming the former and not considering the later. Psychosis can include visual, auditory and tactile hallucinations. Also smell and taste can be involved. I often felt like I had a mask or web on my face, when I wasn’t hearing voices or seeing the color peach in blobs everywhere I looked. FEP can also include paranoia and delusions. Delusions are when you believe in something that is not real even when presented with the facts. Disordered thoughts and speech can also be included in the term psychosis. My tip for surviving FEP is to make sure that your loved ones and those around you understand that you are not dangerous and how they are expected to respond.

Tips for loved ones based on my nursing training and personal experience.

 • Don’t overreact. The victim of Psychosis can pick up on your emotions, if you panic so will they. Don’t take anything said in this state personally.

• Listen non-judgmentally, the feelings are real. Ask “What can I do to help” or “Can you tell me more”. DO NOT dispute your loved ones ‘reality’. This is all ‘real’ to them. You can say that you do not hear or see what the person is experiencing.

• Speak slowly and simply, ask one question at a time. DO NOT treat them as if they are not in the room if speaking to someone else. The person in psychosis can hear you through their delusion and this behavior may lead to paranoia.

• Don’t threaten, especially if dealing with a child, although adults should not be treated this way either. The behavior is not intentional or bad. Stay at eye level don’t hover over the person in psychosis as this may present you as a threat.

• Stay positive and reinforce that they are receiving help. Keep yourself positive and comforting. Above all believe your loved one. What they are experiencing is real to them and no amount of denial on your part will change that and only serve to alienate you to them.

The other major mental health issue for AE warriors is depression. Depression occurs as a part of AE. The autoimmune attack on the brain causes the chemical imbalance that results in AE. You are not just depressed because you have a rare chronic disorder. Why is this distinction important? Because the cure for the depression is curing or controlling the AE. Antidepressant medications can help short term while the autoimmune system is being controlled but should not be necessary long term. Although some people do experience primary depression after the AE is controlled because they have a chronic illness.  Be aware that some of the medication taken for secondary effects of AE can cause the chemical imbalance. However, it is an important distinction in the acute phase of the disorder.  that are prescribed for psychosis should be avoided with autoimmune encephalitis, especially in the cases on anti-NMDAr encephalitis.

The NIMH recognizes several types of depression but the most common type that presents with AE is Psychotic Depression, mixing some form of psychosis with depressed mood. Most often the delusions take the form of depressive subjects. Such as poverty, illness or guilt especially over illness. We have had a few members with autoimmune encephalitis who have committed suicide, so if you feel like harming yourself talk to someone immediately.  If you are a care giver,  watch your warrior closely for signs that depression may include thoughts of self-harm. The usual treatment for AE induced FEP and depression is IV steroids which are then tapered after a steroid sparing agent has been brought to full dose and effectively supporting the patient by suppressing the immune system.  Short term anti-depressants and anti-psychotics may be used to alleviate symptoms until immunosuppression has been achieved.

However, the NIMH does offer some tips that may help with depression during treatment.

• Try to be active and exercise as this increases blood flow to the brain.

• Set realistic goals for yourself.

• Try to spend time with other people and confide in a trusted friend or relative.

• Try not to isolate yourself and let others help you.

• Expect your mood to improve gradually not immediately. Report feelings of self-harm to someone immediately.

• Postpone important decisions, such as getting married or divorced, or changing jobs until you feel better.

• Discuss decisions with others who know you well and have a more objective view of your situation.

• Continue to educate yourself about depression. (I would add also about AE.)

To sum up, while these mental health issues are an aspect of AE and not separate from the disorder and while short term medications may relieve symptoms while waiting for the immune system to become suppressed, the only real fix is to fix the AE.


Donate to Support IAES and our Life Saving Mission


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”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, 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.

EREN’S STORY ~ A Small and Mighty anti-NMDAr Warrior

EREN’S STORY ~ A Small and Mighty anti-NMDAr Warrior

May 24, 2018 | Adriane Lugo

As a Mother of 5 children, I was used to juggling schedules filled with homework, school projects and activities, nursing one of my children when they fell sick with the usual childhood cold or flu and working evenings. None of those skills prepared me for that terrifying day last October 2017 when I found my 3-year-old son, Eren, non-responsive. He was rushed to the hospital. He was admitted into ICU.

Many people do not know what autoimmune encephalitis is. I was one of them.  The neurologist informed us, as our son was in ICU, that he suspected anti-NMDAr encephalitis. I became overwhelmed with fear. As the doctors noticed the fear on my face, they tried to calm me and explain further.  I was in such shock, I couldn’t absorb much of what they were telling me.  Eren’s results came back, he had tested positive for antibodies against the NR1 subunit of the NMDAR. The diagnosis of anti-NMDAr encephalitis was now confirmed.  During Eren’s hospital stay he was given 5 days of IVIG. After he was discharged from the hospital, he received 10 days of steroids.

 (Pictured: Eren receiving 4th infusion of IVIG in hospital.)

This disease turned our lives upside down. The worst part is not knowing what to expect. I watch his every move and question every fever and cold, wondering if this disease is coming back. Remembering images of Eren in ICU still plague me. The tantrums and the medications, what’s normal now? I continued to wonder. 

 (Video of Eren filmed between Filmed October 29th – November 4th 2017.  A dramatic depiction of his anti-NMDAr AE)

It wasn’t until early January when I found International Autoimmune Encephalitis Society that I no longer felt alone.  I could rely on the volunteers within the organization and fellow members of their support group to help me understand what was happening and what to do.  After receiving steroids, Keppra and IVIG in November Eren was improved and the doctor did not feel that any further treatments were necessary. But I began to question this and remained super vigilant.  IAES provided information about how anti-NMDAr was treated and Eren had only had two of the treatments of first line therapy in the protocol.

By April I started noticing that Eren was becoming extremely emotional and at times would burst into tears unwarranted. He then began to experience insomnia. He would tell me he was tired but was having trouble going to sleep. He wanted to go to sleep but sleep would not come. I contacted IAES and reported these symptoms in their educational support group. Receiving confirmation that these were symptoms of anti-NMDAr and being asked what his treatment plan was caused me true worry. Eren didn’t have a treatment plan and from what I was learning from IAES, he should have one.

The neurologist didn’t schedule a follow-up after Eren’s treatment ended.  He gave us his card and said to call if we notice any big changes in Eren. We were told that clinically he was doing better. I contacted IAES for help because the doctor felt that waiting to see how Eren did and treating only when his symptoms became severe was the best course to take. Based on what I reported to IAES, they agreed that our feelings about getting a second opinion were strongly justified. They explained that Eren was experiencing symptoms and according to research by experts in the field should be receiving additional treatment. They recommended a doctor with expertise close to our home and directed me to their doctor’s list.  We were able to get an appointment relatively quickly much to my relief as I understand many experts have waiting list that are 6 months long.

As I write, I can share that we Just came back from an appointment with one of the doctors on the IAES Doctor’s list. I feel so much relief!  She is going to do an evaluation on our son next week, so she can see where he is and what the next steps should be. I feel like a black cloud has been removed from above me. I finally feel like there is hope for my boy. Thank you IAES!   we would be lost without you!


Donate to Support IAES and our Life Saving Mission


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”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, 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.

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

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