IAES’ President Shares Proactive Steps to Take Regarding the COVID-19 Virus

IAES’ President Shares Proactive Steps to Take Regarding the COVID-19 Virus

Hello AE Family,Covid 19 500x341 - IAES’ President Shares Proactive Steps to Take Regarding the COVID-19 Virus

IAES takes pride in keeping our community up-to-date with the latest news in the field of autoimmune neurology and topics that directly impact our lives.  Our motto, “Education is Power” continues to ring true as education does help to steer the best outcomes. Our motto is particularly appropriate in regard to the COVID-19 Virus.

Information about the COVID-19 continues to dominate world news and likely will for some time to come.   We have prepared a flyer of the preventive measures you can take as recommended by the guidance from the Centers for Disease Control and Prevention (CDC).  You can print out and post this flyer at home, school, doctor’s offices, work, place of worship, or anywhere in your community. In addition, we have created an ‘info meme’ that can be easily and widely shared on social media platforms. International Autoimmune Encephalitis Society continues to monitor the situation with the AE community in mind.

 

Download Flyer

 

AE Covid 19 Precautions FB post 500x419 - IAES’ President Shares Proactive Steps to Take Regarding the COVID-19 Virus

The severity of illness or how many people will fall ill from COVID-19 is unknown. However, you are at higher risk if you are immunocompromised due to the immune suppressant medications used in the treatment of autoimmune encephalitis. IAES encourages you to stay informed by following updates from the CDC and/or your local health department. The likelihood of getting COVID-19 depends on where you live in the world and may change quickly.

COVID-19 is a novel virus, and there is still much we have yet to learn. One fact we do know is that an infected person can be a carrier, capable of spreading the virus to others for several days before they begin to show symptoms or know they are sick. Each infected person has the ability to pass the virus on to 2 or 3 people. Implement these hygiene practices now to avoid getting sick. Because there is no way of knowing who a carrier might be, assume you may come in contact with someone who is and institute these preventive hygiene practices and pro-active planning steps right now.

In addition to your advocacy of spreading COVID-19 preventative awareness and implementing the recommended hygiene habits the CDC recommends, plan and prepare ahead should you need to self-quarantine. If a member of your household becomes sick, all family members will have to self-quarantine for 14 days. Because the AE patient’s immune system is compromised, this also means that it takes AE patients longer to fight off a virus and the self-quarantine length may extend beyond the mentioned 14 days. Make sure you have enough food, water, other basic supplies on hand should you need to remain at home for 14 days. Find out if your pharmacy delivers and make sure you will have enough of your medications on hand. Contact your doctor should you have a fever, cough or shortness of breath.

CREATE A NEIGHBORHOOD SUPPORT CIRCLE

I live in the state of Oregon in the U.S.A. The first two cases of COVID-19 were announced last weekend and are located 15 minutes from my home. The Nursing facility in Washington State that was so badly impacted that is being reported daily on national news is a few hours away. While I was stocking up at the supermarket for supplies the other day, seeing the bare shelves, I felt an eerie feeling of being involved in the beginning of an impending community health crisis.

The woman who helped me at the Deli Counter shared a story of how her friend, who was a second-tier transportation bus driver for the Nursing Home that had been so hard hit had been instructed to self-quarantine and it was not being reported on the news. I realized that there was a true possibility that my husband, son and I may have to self-quarantine at some point during this virus outbreak and we do not have any family support.

As I drove home with my car laden with groceries, I started thinking about staying home for two weeks without back up support. We have lived in the same house for 30 years, and this past year our next-door neighbor, who we loved dearly, moved away and our neighbors directly across the street sold their house. Both neighbors had been a wonderful support to us and us to them over the years and I mourned the loss.

However, we had started to get to know the young couple across the street and we were already lending each other a helping hand. She has a home business as a massage therapist and a 14-month-old daughter. They were at high risk, I realized. There is a couple in their 80’s two doors up from us and they have no family. They are at high risk. Our new neighbor next door, a bachelor and Uber driver is high risk. Another neighbor of ours is a mailman and his wife works at the local elementary school. They are at high risk. The couple next door on our other side are in their late sixties and he has health concerns. They are at high risk. Next to them is a couple whose sons are grown, married and parents now, empty nesters who are not high risk. I realized that the first 8 houses on our block have 6 high-risk households. If I have concerns, they must too. I thought we need to create a neighborhood support network. We will be the best possible back up system for each other and everyone’s concerns can vanish. That’s exactly what I did.

One by one I contacted my neighbors and explained my idea. If one of us became ill, we would have to self-quarantine. Other neighbors in the support network could drop off supplies and meals and pick up prescriptions or whatever was needed for that household. We could all chip in and help where and when we could. We would become our own best built-in back-up system.

The smiles, relief, and enthusiasm everyone greeted the idea with did not surprise me. We needed each other, and it would be a great way to get to know our new neighbors. I opened a text message group with everyone included and typed up a telephone directory. Using a plastic protective sleeve, I included the IAES preventative health measures COVID-19 flyer back to back with the directory.  I texted the ‘Neighborhood Support Network’ group to let my neighbors know I would leave their telephone list by their front door. My phone started pinging away as my message was read and I got the chance to visit with all of my neighbors as they greeted me upon my arrival. We laughed and joked and shared stories with each other. Everyone was so excited about the idea and grateful to live among such supportive neighbors.

I feel safer tonight. I know that if one of my neighbors gets sick or just needs a helping hand, they will text or call. Everyone was ‘all in’ and ready to do their part to support the whole. We are going to be just fine on SW Parkview Loop in Beaverton, Oregon. We plan on keeping our network as a permanent network solution too. There is a silver lining in everything I thought. My life just became richer. I hope you do the same in your neighborhood. We are #StrongerTogether.

With Fondness for you all,

Tabitha Orth

President,

International Autoimmune Encephalitis Society

Click for Facebook COVID-19 Fact Sheet
Click for Twitter COVID-19 Fact Sheet
Click for Instagram COVID-19 Fact Sheet

KETO Diet: What is it? Who is it for? And why?

KETO Diet: What is it? Who is it for? And why?

Keto Diet Blog FB post - KETO Diet: What is it? Who is it for? And why?January-28-2020 | Daria Muir, M.D.

It is important that we all stay well informed. When a person receives a diagnosis of autoimmune encephalitis, they want to do whatever they can to improve their health. Some will reach for what appears to them to be a positive action and decide to change their diet. This can have very negative unintended consequences. To ensure your safety, and in IAES’ commitment to providing accurate information to assist you in being well informed on your road to recovery, today I’m going to give you a simple explanation about the Keto Diet.

What is it?

 

KETO is a diet that excludes carbohydrates completely. Basically, you eat just proteins and fats. Carbohydrates are the main fuel generator for the body (and especially the brain). They transform into glucose (the fuel). By switching to the KETO diet, one leaves the body without the fuel source. So, the body learns to turn other stuff into fuel. In this case, mainly fat. But also, the muscles. That’s what we call “putting the body into a state ok Ketosis). Is this good? Is it bad? For some people it is good. For some it is bad. For some it is an unnecessary risk, meaning there is no proof whatsoever that it helps, but there is proof that it can do some damage.

Who is a candidate for the Keto Diet?

 

Keto diet is recommended in a small number of diseases:

– severe Epilepsy, irresponsive to golden standard medication (being more efficient in children);

– Glucose Transporter Type 1 Deficiency Syndrome (a genetical disease that does not allow the body to produce GluT1 , so the brain does not get glucose- fuel. The ONLY treatment in this situation is keto diet!);

– it is also used by some nutritionists with patients that need to lose weight.

!!!! It needs to be assessed, recommended and monitored by a doctor!!!

 

There is no proof that the KETO Diet works in Autoimmune Encephalitis. (It can be recommended in severe Epilepsy post-Acquired Brain Injury in AE, but it does not treat AE, it treats the Epilepsy resulted from a brain injury from AE. As you know by now, Epilepsy and Seizures are not the same things. In AE we may have seizures, due to brain swelling and antibodies attacking our healthy brain cell. This is why we need immunosuppressant/ immunomodulatory treatment to control the disease.

Epilepsy is a disease resulted from the brain being injured and scarred.

Epilepsy can happen in AE but having seizures does not mean you have Epilepsy! Your doctor needs to asses that and tell you that you acquired Epilepsy!

Why? And why not the KETO Diet?

 

Now that you understand who an appropriate candidate for the Keto Diet would be, let’s discuss what can happen if you try the diet on your own without discussing it with your doctor.

Why does the Keto Diet need to be recommended by your doctor and monitored all the time?

 

Because it can be dangerous! Yes, it can be.

For diabetics. Also, people with kidney disease or who take medication that increases the risk of Kidney disease. For example, It can lead to major weight loss, below the normal BMI, that can endanger hormonal balance. It can increase pressure on the liver and kidney and eventually eats up your muscles too. The body can enter into ketosis (dangerous for some people).

KETO Diet is not easy, not harmless, not for anybody and not proven effective in AE.

 

Your doctor needs to assess and recommend that for you or for your child because it can be dangerous and can cause harm. If you have the conditions stated at point 2, then you might benefit from a very well supervised KETO Diet. Always ask your doctor! And please, don’t recommend it to other people, because it can harm them! Our concern is your safety and sharing accurate information for your best overall health.

References:

Ketogenic Diet and Epilepsy: What We Know So Far

Ketogenic Diet in Patients with GLUT1 Deficiency Syndrome 

Ketogenic Diet 

 

Your generous Donations allow IAES to continue our important work and save lives!

 

seal - KETO Diet: What is it? Who is it for? And why?

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

why zebra - KETO Diet: What is it? Who is it for? And why?

When Your Brain is on Fire

When Your Brain is on Fire

brain on fire

January-22-2020 | Carolyn Keating, PennNeuroKnow

Imagine you’re a bright twenty-something with a new job and a new relationship.  Everything seems to be going your way until you start becoming paranoid and acting erratically.  Then come the hallucinations and seizures.  You’re admitted to a hospital where you’re (incorrectly) diagnosed with a psychiatric disorder.  You swing from violence into a state of immobility and stupor.  And perhaps even scarier?  You don’t remember any of it.  Sound like a nightmare?  Well, it actually happened to Susannah Calahan, who details her terrifying story first-hand in her 2012 book Brain on Fire: My Month of Madness.

What caused these frightening symptoms?  The answer was a disease that had only been discovered a few years earlier (right here at Penn!): NMDAR encephalitis.  There are four main phases of the disorder.  In the prodromal phase, many but not all patients experience a flu-like illness for up to 3 weeks.  The psychotic phase is accompanied by delusions, auditory and visual hallucinations, depression, paranoia, agitation, and insomnia.  At this stage, most patients are taken to the hospital, where around 40% are misdiagnosed as having a psychiatric disorder like schizophrenia.  As this phase progresses, seizures are very common (although they can occur at any time throughout the illness), as well as involuntary muscle movements like lip-smacking or grimacing, catatonia (muscular rigidity and mental stupor), impaired attention, and memory loss.  The next phase is unresponsiveness, which includes symptoms like the inability to speak, loss of voluntary movement, and sometimes abnormal muscle contractions that cause involuntary writhing movements.  The last phase is the hyperkinetic phase and is characterized by instability of involuntary bodily functions such as breathing, blood pressure, heartbeat, and temperature.  Many patients who breathe too slowly often need to be placed on a ventilator at this stage. The decline to ventilator support can progress very rapidly after several weeks in the psychotic stage, and ultimately patients can be hospitalized for several months with the disease1–3.

What does NMDAR encephalitis actually mean?  This disease is an autoimmune disorder, meaning the body’s immune system mistakenly attacks its own healthy cells.  Normally the body identifies foreign substances by making something called an antibody that recognizes a unique part of the invader, thus targeting it for attack and destruction.  In NMDA encephalitis though, the immune system attacks the brain (that’s where to term encephalitis comes from), specifically a type of neurotransmitter receptor called an NMDA receptor (NMDAR).  These receptors bind the neurotransmitter glutamate, and play an important role in learning, memory, cognition, and behavior.  In fact, the symptoms of NMDAR encephalitis resemble those caused by drugs such as ketamine or PCP that prevent the activation of NMDARs.  For instance, at low doses ketamine and PCP cause paranoia, false perceptions, and impaired attention (like the early stages of NMDAR encephalitis), and at higher doses these drugs cause psychosis, agitation, memory and motor disturbances, and eventually unresponsiveness, catatonia, and coma2.  Several mechanisms have been proposed to explain the symptoms caused by antibodies targeting the NMDAR, but most of the evidence seems to support the idea that the receptors get removed from the cell surface and internalized.  For instance, experiments in the laboratory demonstrate that when animal neurons grown in a dish are exposed to patients’ anti-NMDAR antibodies, the number of NMDARs on the cell surface decreases as the amount of antibodies increase.  When the antibodies are removed, the number of NMDAR receptors on the cell surface returns to baseline within 4 days1.

It’s easy to remove antibodies in a dish, but how do doctors get the body to stop producing antibodies against itself?  Step one is identifying what triggers antibody production in the first case.  Interestingly, NMDAR encephalitis predominantly affects women, and ovarian teratomas (a type of tumor made up of multiple types of tissues, which can include nervous system tissue) are responsible for 50% of cases in young women2.  In patients who have some sort of tumor, removal improves symptoms in 75% of cases.  Interestingly, herpes simplex virus can also cause encephalitis (inflammation of the brain), and about 20% of these patients also develop antibodies against NMDAR2.  Treatment consists of immunotherapy: corticosteroids, IV infusion of immunoglobulins, and/or plasma exchange1, however patients with a viral trigger tend to be less responsive to treatment than those with a teratoma trigger or the 50% of patients with an unknown trigger2.  Once treatments begin improvements in symptoms start within a few weeks, though return to baseline functioning can take up to three years.  Rehabilitation is required for many patients after they leave the hospital.  Deficits in attention, memory, and executive function may linger for years, but luckily over 75% of patients with the disease recover to at or near baseline neurological functioning1.

Doctors and scientists hope to develop new treatments involving immunotherapy combined with small molecules that are able to access the brain to directly combat the effects of anti-NMDAR antibodies, ideally leading to faster control of symptoms and shorter recovery time2.  A brand new animal model of the disease was just described last week that will hopefully lead to more discoveries about how the disease is triggered and potential new therapies4.  And with increased awareness of autoimmune disorders against the brain, doctors will be able to more quickly correctly diagnose patients with this illness and get them the treatment they need.

References:

  1. Venkatesan, A. & Adatia, K. Anti-NMDA-Receptor Encephalitis: From Bench to Clinic. ACS Chem. Neurosci. 8, 2586–2595 (2017).
  2. Dalmau, J. NMDA receptor encephalitis and other antibody-mediated disorders of the synapse: The 2016 Cotzias Lecture. Neurology 87, 2471–2482 (2016).
  3. Dalmau, J. et al. Anti-NMDA-receptor encephalitis: case series and analysis of the effects of antibodies. Lancet Neurol. 7, 1091–1098 (2008).
  4. Jones, B. E. et al. Anti-NMDA receptor encephalitis in mice induced by active immunization with conformationally-stabilized holoreceptors. bioRxiv 467902 (2018). doi:10.1101/467902

IAES PNK Partnership logo 300x251 - When Your Brain is on Fire

Your generous Donations allow IAES to continue our important work and save lives!

 

seal - When Your Brain is on Fire

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

why zebra - When Your Brain is on Fire

Travel Tips for the AE Warrior

Travel Tips for the AE Warrior

December-18-2019 | Mari Wagner Davis, RN

Travel tips  Blog Graphic 1 200x300 - Travel Tips for the AE Warrior

Last Summer my husband and I traveled to Italy to celebrate our 25th wedding anniversary. Not only was it special because it was our 25th anniversary, but special because we had survived 2 years after my seizures and diagnosis with autoimmune encephalitis.  My husband has learned a variety of tricks to help me feel more comfortable in any environment. Traveling overseas, was something we hadn’t done since I got sick.

I found the following tips helpful and wanted to share them:

 

  1. If you haven’t traveled at all since you were diagnosed, consider doing a weekend stay close to home, to help identify any issues like finding the room, remembering which floor you are on) ahead of time.

2. Bring your insurance cards with you, physician’s phone number and important medical records(I had mine copied to a computer disc).

 

3. Make sure you have reservations and confirm them, keep a folder where you can write down confirmation numbers.

 

4. Provide your family members with your itinerary, including phone numbers.

 

5. Identify how to get medical help in countries where you do not speak the language.

 

6. Consider using a travel agent that specializes in planning trips for people with disabilities.

 

7. Plan on addressing jet lag before you leave. Try to adjust your sleep schedule a couple of hours to the time zone you will be in.

 

8. Adjust scheduling your medication schedule as close as you can to the time zone you are traveling to a week or so before you leave.

 

9. While flying try not to sleep too much especially if you will be arriving in the evening.

 

10. Set your watch to local time so you do not get confused.

 

11. Drink plenty of fluids.

 

12. Daylight can reset your internal clock, be aware that you may need to nap to adjust to the different time zone.

 

13, One trick I have found helpful in hotel rooms is to leave the bathroom light on, so I can find it in the middle of the night.

 

14. Finally, be flexible and have a sense of humor!

 

Your generous Donations allow IAES to continue our important work and save lives!

seal - Travel Tips for the AE Warrior

Become an Advocate by sharing your story. It may result in an accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

Submit Your Story

 

why zebra - Travel Tips for the AE Warrior

 

 

How does Sleep Affect the Blood-brain Barrier?

How does Sleep Affect the Blood-brain Barrier?

December-11-2019 | Sarah Reitz, PennNeuroKnow

IAES PNK Partnership logo 300x251 - How does Sleep Affect the Blood-brain Barrier?Autoimmune encephalitis (AE) is the name for a group of conditions that occur when the body’s immune system mistakes its own healthy brain cells for invaders, leading to brain inflammation that ultimately triggers a number of other symptoms. Normally, the body’s immune system has only limited access to the brain, as it is protected by the blood-brain barrier (BBB). When this barrier is healthy, it can prevent an immune system attack by blocking immune cells and antibodies targeting brain cells from actually entering the brain. Like any fortress, however, the BBB isn’t completely impenetrable. Given that AE symptoms occur when immune cells or antibodies manage to cross the BBB, researchers think that the weakening of this barrier plays a critical role in AE and may even be a target for future therapies to reduce or prevent AE symptoms. But what causes the BBB to weaken, allowing cells, antibodies, and other molecules to invade the brain?

 

The blood-brain barrier: gatekeeper of the brain

Before discussing how the BBB becomes impaired, we need to understand how the healthy BBB functions. The BBB is often referred to as a “gateway”, made up of tightly joined endothelial cells that surround the blood vessels in the brain and spinal cord1. Outside of the brain, the endothelial cells lining blood vessels have small spaces between them, allowing for the exchange of substances between the blood and the surrounding tissue. However, the endothelial cells of the BBB are connected to each other by proteins called tight junction proteins, which squeeze the cells tightly together, blocking larger cells and molecules from freely flowing between the blood supply and the brain (Figure 1).

PNK Sleep and BBB 300x290 - How does Sleep Affect the Blood-brain Barrier?

Figure 1: The blood-brain barrier is made up of endothelial cells that are tightly connected to each other by tight junction proteins (purple). These tight connections prevent unwanted substances from traveling between the blood and the brain. Different types of transporter proteins (yellow & blue) shuttle only certain types of molecules between the blood and brain.

The BBB is selectively permeable, meaning it allows only certain substances to enter and leave the brain. One way that molecules can cross the BBB is by endocytosis, a process where the endothelial cells uses its cell membrane to take in a molecule on one side (say, the side facing the blood) and pass it through to the other side (facing the brain) where it is released1. The endothelial cells of the BBB also express a variety of transporter proteins, which actively move molecules between the blood and the brain (Figure 1). Additionally, small, fat-soluble molecules can cross the BBB without any help from endocytosis or transporter proteins, giving the brain access to important nutrients and energy sources1.

BBB permeability changes across the day

The permeability of the BBB is not always the same, however. Research has shown that its permeability actually changes depending on the time of day2. Like many cells in the body, BBB cells are controlled by circadian rhythms, biological processes that cycle roughly every 24 hours. These rhythms are driven by a molecular “clock” within each cell, and cells across the body are synchronized by the “master clock” located in the brain.

What do these rhythms mean for BBB permeability though? Interestingly, research in both flies and mice shows that the amount of hormones, inflammatory proteins, and other molecules that cross from the blood into the brain fluctuates across the day, with peak BBB permeability occurring at night2.

Sleep loss impairs BBB function

Circadian rhythms aren’t the only daily process that affects the integrity of the BBB. Sleep—or more appropriately, lack of sleep—is also known to affect the BBB’s protection of the brain. This relationship between sleep and the BBB is increasingly important as sleep restriction becomes more and more common in our modern society.

Sleep loss is also highly relevant to the AE community. One study found that 73% of AE patients surveyed reported sleep disturbances, including gasping/snoring and insomnia. Even further, patients with AE had decreased total sleep time and increased fragmentation of sleep compared to people without AE3. But how exactly does sleep loss affect the BBB?

Blood Brain Barrier after full sleep 300x71 - How does Sleep Affect the Blood-brain Barrier?

Figure 2: After periods of sleep loss, the blood-brain barrier is negatively affected in many ways (left). Inflammatory signaling caused by TNFα and IL-6 increases, leading to the breakdown of tight junction proteins (purple). This causes gaps between endothelial cells, allowing unwanted immune cells and antibodies to enter the brain. After sleep loss, the endothelial cells also make fewer of the transporter proteins (blue and yellow) that are required to shuttle necessary molecules between the brain and blood.

Multiple studies have now shown that sleep restriction weakens the BBB. One reason is due to the increase in inflammatory signaling that results from extended periods of wakefulness. Increases in inflammatory proteins, like TNFα and IL-6, are known to break down the tight junction proteins that keep the endothelial cells tightly joined together2 (Figure 2). Sleep-deprived mice and rats showed decreased numbers of tight junction proteins, leading to increased BBB permeability.

In addition to weakened tight junctions between endothelial cells, sleep loss also increases permeability by enhancing the rate of endocytosis across the BBB2, meaning that the endothelial cells shuttle more molecules from the blood into the brain. Relevant to AE, this increased permeability means that more immune cells and antibodies can enter the brain after sleep loss compared to after a full night’s sleep.

While these results are a bit frightening, there is good news. All of the damage to the BBB caused by sleep loss returns to normal after getting enough sleep! One study found that even an extra 1-2 hours of sleep following sleep loss restored BBB function in most brain areas4. Given even more time to sleep, the BBB throughout the brain returned to normal function5. These results suggest that treating the sleep disorders commonly associated with AE may help strengthen the BBB, increasing the brain’s protection against the immune system’s cells and antibodies and improving long-term outcomes for patients.

The BBB as a treatment target

Given that AE is caused by immune cells and antibodies infiltrating and attacking the brain, researchers are now looking at the BBB as a potential therapeutic target1. Treatments that strengthen the BBB will hopefully reduce the number of immune cells and antibodies that make it into the brain, and may also increase the effectiveness of some AE medications, such as anti-inflammatory drugs or immune-suppressants. Because these AE medications are specifically designed to cross a healthy BBB and access the brain, strengthening a weakened BBB will protect against molecules that aren’t supposed to be in the brain, while still allowing the necessary medication in.

The known circadian effects on BBB permeability can also be used in determining when to give medication that needs to cross the BBB. Medication can be given at the time of day when BBB permeability is highest to increase the amount of drug that makes it into the brain. In fact, this has already been studied with anti-seizure medication in epilepsy. For instance, in both flies and humans, when medication was given at night during peak BBB permeability, it was most effective at controlling seizures6,7.

This new strategy of “chronotherapeutic” dosing schedules has the potential to improve the efficacy of medication in many diseases. By administering drugs when it is easiest for them to enter the brain, doctors may be able to see results at lower doses of the drug, potentially reducing the risk of harmful side effects. As we continue to learn more about the BBB, scientists may identify even more ways to improve BBB health in the many disease states where it is compromised.

Free Download for BBB Handout

 

Your generous Donations allow IAES to continue our important work and save lives!

seal - How does Sleep Affect the Blood-brain Barrier?

 

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

why zebra - How does Sleep Affect the Blood-brain Barrier?

Image References:  Figure 1 and 2 created with BioRender.com

References:

  1. Platt MP, Agalliu D, Cutforth T (2017) Hello from the other side: How autoantibodies circumvent the blood-brain barrier in autoimmune encephalitis. Front. Immunol. 8:442. doi: 10.3389/fimmu.2017.00442
  2. Cuddapah VA, Zhang SL, Sehgal A (2019) Regulation of the blood-brain barrier by circadian rhythms and sleep. Trends Neurosci 42(7):500-510. doi: 10.1016/j.tins.2019.05.001
  3. Blattner MS, de Bruin GS, Bucelli RC, Day GS (2019) Sleep disturbances are common in patients with autoimmune encephalitis. J Neurol 266(4):1007-1015. doi: 10.1007/s00415-019-09230-2
  4. Gomex-Gonzalez B, et al. (2013) Rem sleep loss and recovery regulates blood-brain barrier function. Curr. Neurovasc. Res. 10, 197-207
  5. He J, Hsuchou H, He Y, Kastin AJ, Wang Y, &Pan W (2014) Sleep restriction impairs blood-brain barrier function. J Neurosci 34(44)14697-14706. doi: 10.1523/jneurosci.2111-14.2014
  6. Zhang SL, Yue Z, Arnold DM, Artiushin G, Sehgal A (2018) A circadian clock in the blood-brain barrier regulates xenobiotic efflux. Cell 173(1):130-139. doi: 10.1016/j.cell.2018.02.017
  7. Yegnanarayan R, et al. (2006) Chronotherapeutic dose schedule of phenytoin and carbamazepine in epoleptic patients. Chronobiol. Int 23, 1035-1046

 

 

 

Caregiver Stress and Burnout. Tips for Regaining Your Energy, Optimism, and Hope

Caregiver Stress and Burnout. Tips for Regaining Your Energy, Optimism, and Hope

September 18, 2019 | Melinda Smith, M.A.

Sally Birch holding Moms hand 230x300 - Caregiver Stress and Burnout. Tips for Regaining Your Energy, Optimism, and HopeThe demands of care giving can be overwhelming, especially if you feel that you’re in over your head or have little control over the situation. If the stress of care-giving is left unchecked, it can take a toll on your health,
relationships, and state of mind eventually leading to caregiver burnout. And when you’re burned out, it’s tough to do anything, let alone look after someone else. That’s why taking
care of yourself isn’t a luxury, it’s a necessity. There are plenty of things you can do to rein
in the stress of care-giving and regain a sense of balance, joy, and hope in your life.

What is caregiver burnout?

Caregiver burnout is a state of emotional, mental, and physical exhaustion caused by the
prolonged and overwhelming stress of care-giving. While caring for a loved one can be very rewarding, it also involves many stressors. And since care-giving is often a long-term challenge, the stress it generates can be particularly damaging. You may face years or even decades of care-giving responsibilities. It can be particularly disheartening when there’s no hope that your family member will get better or if, despite your best efforts, their condition is gradually deteriorating.

If you don’t get the physical and emotional support you need, the stress of care-giving can leave you vulnerable to a wide range of problems, including depression, anxiety, and eventually burnout. And when you get to that point, both you and the person you’re caring for suffer. That’s why managing the stress levels in your life is just as important as making sure your family member gets to their doctor’s appointment or takes their medication on
time. No matter how stressful your care-giving responsibilities or how bleak your situation seems, there are plenty of things you can do to ease your stress levels, avoid caregiver burnout, and start to feel positive and hopeful again.

Signs and symptoms of caregiver stress and burnout

By learning to recognize the signs of caregiver stress, you can take steps to deal with the problem and prevent burnout. Or if you recognize that you’ve already hit your breaking point, you can take action right away. Once you burn out, care-giving is no longer a healthy option for either you or the person you’re caring for, so it’s important to watch for the warning signs.

Common signs and symptoms of caregiver stress

  • Anxiety, depression, irritability
  • Feeling tired and run down
  • Difficulty sleeping
  • Overreacting to minor nuisances
  • New or worsening health problems
  • Trouble concentrating
  • Feeling increasingly resentful
  • Drinking, smoking, or eating more
  • Neglecting responsibilities
  • Cutting back on leisure activities

Common signs and symptoms of caregiver burnout

  • You have much less energy than you once had
  • It seems like you catch every cold or bout of flu that’s going around
  • You’re constantly exhausted, even after sleeping or taking a break
  • You neglect your own needs, either because you’re too busy or you don’t care anymore
  • Your life revolves around care-giving, but it gives you little satisfaction
  • You have trouble relaxing, even when help is available
  • You’re increasingly impatient and irritable with the person you’re caring for
  • You feel helpless and hopeless

While caring for a loved one will never be stress-free, the following tips can help you to lighten the load, avoid the symptoms of caregiver burnout, and find more balance in your life.

Cara Arnold daughter Gracie 3 225x300 - Caregiver Stress and Burnout. Tips for Regaining Your Energy, Optimism, and Hope

Avoid caregiver burnout by feeling empowered

Feeling powerless is the number one contributor to burnout and depression. And it’s an easy trap to fall into as a caregiver, especially if you feel stuck in a role you didn’t expect or can spend a tremendous amount of energy dwelling on things you can’t change and for helpless to change things for the better. But no matter the situation, you aren’t powerless. This is especially true when it comes to your state of mind. You can’t always get the extra
time, money, or physical assistance you’d like, but you can always get more happiness and hope.

Practice acceptance. When faced with the unfairness of a loved one’s illness or the burden of care-giving, there’s often a need to make sense of the situation and ask “Why?” But you which there are no clear answers. And at the end of the day, you won’t feel any better. Try to avoid the emotional trap of feeling sorry for yourself or searching for someone to blame.

Embrace your caregiving choice. Acknowledge that, despite any resentments or burdens you feel, you have made a conscious choice to provide care. Focus on the positive reasons behind that choice. Perhaps you provide care to repay your parent for the care they gave you growing up. Or maybe it’s because of your values or the example you want to set for your children. These deep, meaningful motivations can help sustain you through difficult
times.

Look for the silver lining. Think about the ways care giving has made you stronger or how it’s brought you closer to the person you’re taking care of or to other family members.

Don’t let care-giving take over your life. Since it’s easier to accept a difficult situation when there are other areas of your life that are rewarding, it’s important not to let caregiving take over your whole existence. Invest in things that give you meaning and purpose whether it’s your family, church, a favorite hobby, or your career.

Focus on the things you can control. You can’t wish for more hours in the day or force your brother to help out more. Rather than stressing out over things you can’t control, focus on how you choose to react to problems.

Celebrate the small victories. If you start to feel discouraged, remind yourself that all your efforts matter. You don’t have to cure your loved one’s illness to make a difference. Don’t underestimate the importance of making your loved one feel more safe, comfortable, and loved!

Get the appreciation you need

Feeling appreciated can go a long way toward not only accepting a stressful situation, but enjoying life more. Studies show that caregivers who feel appreciated experience greater physical and emotional health. Care-giving actually makes them happier and healthier, despite its demands. But what can you do if the person you’re caring for is no longer able to feel or show their appreciation for your time and efforts?

Imagine how your loved one would respond if they were healthy. If they weren’t preoccupied with illness or pain (or disabled by dementia), how would your loved one feel about the love and care you’re giving? Remind yourself that the person would express gratitude if they were able.

Applaud your own efforts. If you’re not getting external validation, find ways to acknowledge and reward yourself. Remind yourself of how much you are helping. If you need something more concrete, try making a list of all the ways your caregiving is making a difference. Refer back to it when you start to feel low.

Talk to a supportive family member or friend. Positive reinforcement doesn’t have to come from the person you’re caring for. When you’re feeling unappreciated, turn to friends and family who will listen to you and acknowledge your efforts.

Ask for care-giving help

Taking on all of the responsibilities of care-giving without regular breaks or assistance is a surefire recipe for caregiver burnout. Don’t try to do it all alone.

Look into respite care. Enlist friends and family who live near you to run errands, bring a hot meal, or watch the patient so you can take a well-deserved break. Volunteers or paid help can also provide in-home services, either occasionally or on a regular basis. Or you can
explore out-of-home respite programs such as adult day care centers and nursing homes.

Speak up. Don’t expect friends and family members to automatically know what you need or how you’re feeling. Be up front about what’s going on with you and the person that you’re caring for. If you have concerns or thoughts about how to improve the situation, express
them, even if you’re unsure of how they’ll be received. Start a dialogue.

Spread the responsibility. Try to get as many family members involved as possible. Even someone who lives far away can help. You may also want to divide up care-giving tasks. One person can take care of medical responsibilities, another with finances and bills, and another with groceries and errands, for example.

Set up a regular check-in. Ask a family member, friend, or volunteer from your church or senior center to call you at a regular time (daily, weekly, or as often as you think you need it). This person can help you spread status updates and coordinate with other family members.

Say “yes” when someone offers assistance. Don’t be shy about accepting help. Let people feel good about supporting you. It’s smart to have a list ready of small tasks that others could easily take care of, such as picking up groceries or driving your loved one to an appointment.

Be willing to relinquish some control. Delegating is one thing, trying to control every aspect of care is another. People will be less likely to help if you micromanage, give orders, or insist on doing things your way.

Give yourself a break

As a busy caregiver, leisure time may seem like an impossible luxury. But you owe it to yourself—as well as to the person you’re caring for—to carve it into your schedule. Give yourself permission to rest and to do things that you enjoy on a daily basis. You will be a better caregiver for it.

There’s a difference between being busy and being productive. If you’re not regularly taking time-off to de-stress and recharge your batteries, you’ll end up accomplishing less in the long run. After a break, you should feel more energetic and focused, so you’ll quickly make up for your relaxation time.

Maintain your personal relationships. Don’t let your friendships get lost in the shuffle of care-giving. These relationships will help sustain you and keep you positive. If it’s difficult to leave the house, invite friends over to visit with you over coffee, tea, or dinner.

Share your feelings. The simple act of expressing what you’re going through can be very cathartic. Sharing your feelings with family or friends won’t make you a burden to others. In fact, most people will be flattered that you trust them enough to confide in them, and it will only strengthen your bond.

Prioritize activities that bring you enjoyment. Make regular time for hobbies that bring you happiness, whether it’s reading, working in the garden, tinkering in your workshop, knitting, playing with the dogs, or watching the game.

Find ways to pamper yourself. Small luxuries can go a long way towards relieving stress and boosting your spirits. Light candles and take a long bath. Ask your spouse for a back rub. Get a manicure. Buy fresh flowers for the house. Whatever makes you feel special.

Make yourself laugh. Laughter is an excellent antidote to stress—and a little goes a long way. Read a funny book, watch a comedy, or call a friend who makes you laugh. And whenever you can, try to find the humor in everyday situations.

Get out of the house. Seek out friends, family, and respite care providers to step in with care-giving so you can have some time away from the home.

Take care of your own health

exercise 300x200 - Caregiver Stress and Burnout. Tips for Regaining Your Energy, Optimism, and HopeThink of your body like a car. With the right fuel and proper maintenance, it will run reliably and well. Neglect its upkeep and it will start to give you trouble. Don’t add to the stress of your care-giving situation with avoidable health woes.

Keep on top of your doctor visits. It’s easy to forget about your own health when you’re busy with a loved one’s care. Don’t skip check-ups or medical appointments. You need to be healthy in order to take good care of your family member.

Exercise. When you’re stressed and tired, the last thing you feel like doing is exercising. But you’ll feel better afterwards. Exercise is a powerful stress reliever and mood enhancer. Aim for a minimum of 30 minutes on most days—break it up into three 10-minute sessions if
that’s easier. When you exercise regularly, you’ll also find it boosts your energy level and helps you fight fatigue.

Practice a relaxation technique. A daily relaxation or meditation practice can help you relieve stress and boost feelings of joy and well-being. Try yoga, deep breathing, progressive muscle relaxation, or mindfulness meditation. Even a few minutes in the middle of an overwhelming day can help you feel more centered.

Eat well. Nourish your body with fresh fruit, vegetables, lean protein, and healthy fats such as fish, nuts, and olive oil. Unlike sugar and caffeine—which provide a quick pick-me-up and an even quicker crash—these foods will fuel you with steady energy.

Don’t skimp on sleep. Cutting back on time in bed is counterproductive—at least if your goal is to accomplish more. Most people need more sleep than they think (8 hours is the norm). When you get less, your mood, energy, productivity, and ability to handle stress will suffer.

seal 150x150 - Caregiver Stress and Burnout. Tips for Regaining Your Energy, Optimism, and Hope

Your generous Donations allow IAES to continue our important work and saves lives!

Become an Advocate by sharing your story. It may result in an accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to: IAES@autoimmune-encephalitis.org  

Why the zebra 2 - Caregiver Stress and Burnout. Tips for Regaining Your Energy, Optimism, and Hope

Special Thanks to HelpGuide.org for permission to reprint this article.

 

 

IAES Turns 3. Meet Our New Board of Directors

IAES Turns 3. Meet Our New Board of Directors

September 5th, 2019

The IAES Board of Directors is a group of committed volunteers. No board member receives compensation. Therefore, we are especially grateful to have the expertise and talents of these dedicated professionals. Our annual election results bring us some familiar faces, who are now in new positions, and some new faces. All of whom are fully dedicated to serving the worldwide autoimmune encephalitis community and advancing our mission.

Tab and Miko 2 218x300 - IAES Turns 3. Meet Our New Board of Directors

Tabitha Andrew Orth, President

daria 273x300 - IAES Turns 3. Meet Our New Board of Directors

Dr. Daria Muir, Secretary

ezgif 4 904aeb29868a - IAES Turns 3. Meet Our New Board of Directors

Gene Desotell, Vice President

Oksana Sweeney treasurer IAES 201x300 - IAES Turns 3. Meet Our New Board of Directors

Oksana Sweeney, C.P.A, Treasurer

 

Dear AE Family,

Who would have imagined in 2016 that IAES would change the direction of the AE community?  Yet that is the praise we are hearing from Doctors, patients, caregivers and families from all over the world.

As the community’s only Family/Patient centered non-profit, IAES offers services that were never available before.  IAES provides guidance from when a person first becomes ill all the way through to their recovery/rehabilitation. You find a family you never knew you had with IAES. We take your hand and become your constant BFF resource no matter what challenge you find yourself faced with.

Our free pro-active guide, the ‘First Aid Tool Kit’, first aid tool kit 225x300 - IAES Turns 3. Meet Our New Board of Directorshas become the ‘go to’ guide in the AE community.

IAES provides information that overturns treatment denials, medical over billing, educational support in understanding treatments, the disease process and what to expect. Guidance to improve relationships with your medical team, resources that affect every avenue of this journey.

Doctors around the world utilize our website to accurately diagnose and treat their patients. A team of doctors in Russia contacted us to thank us for the work we do and reported that the information they were able to access on our website saved their patients’ lives.

Our collaboration with top researchers in Autoimmune Encephalitis continues to widen. The increase in awareness in the medical community has resulted in a much higher rate of patients getting diagnosed faster.  The daily gratitude we receive for our services just might give you a ‘swelled head’, (pun intended), but our work has only just begun!

Celebrate our birthday by becoming an IAES Angel.

When you become an #IAESANGEL, International Autoimmune Encephalitis Society will send you an “I am an IAES Angel” 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.

https://autoimmune-encephalitis.org/iaes-angel/

Click image. (note: To become an IAES Angel, select “I would like to designate this donation to a specific fund”, and then select: “I would like to become an IAES Angel”.

 

With Gratitude,

Tabitha Andrews Orth, President,

International Autoimmune Encephalitis Society

E-mail: Tabitha.Orth@autoimmune-encephalitis.org

 

 

 

Your generous Donations allow IAES to continue our important work and saves lives!

Why the zebra 2 - IAES Turns 3. Meet Our New Board of Directors

Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children’s Hospital

Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children’s Hospital

TCH AE Day 11 242x500 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's HospitalAugust-7-2019 | Sheila Sims

Hello all!

My daughter and I attended the July 27th ‘Day of Strength’ event at Texas Children’s Hospital.  I wanted to share our experience as I hope others will get the opportunity to attend events like this one in the future as well. We were informed about this convention by my daughter’s Neuroimmunologist (Dr. Rohini) as we had been in her office for my daughter’s first visit with her. She informed us that there would be information from experts attending and speaking on Autoimmune Encephalitis. I was intrigued so I immediately went online and booked our tickets.

A little back story about our personal experience with Anti-Nmda Receptor Encephalitis. It all began on February 7, 2019. My daughter had been feeling “not herself” for a couple of weeks. She informed me she could not think straight, she was confused, eye sight was not right (seeing double) and she was exhausted. I made her an appointment with her primary and she was diagnosed with a UTI.

I figured OK, maybe this is a bad one and after a round of antibiotics, she will feel much better. That was not the case. After a couple of trips to the ER after her appointment, things just started to get worse. I made her a second appointment with her primary, as I knew something was not right. The day of her second appointment is when we would witness the scariest times of our lives. As she was getting ready for her appointment, she started making no sense with her words and had no clue about what we were doing.  She didn’t even know where she was.  Then out of nowhere, she collapsed and started seizing.

This was all so completely out of the ordinary for her as she had been healthy her entire life. She was rushed to the hospital by ambulance as she seized again en-route by ambulance to the hospital. When we arrived, they immediately took her for scans and performed a lumbar puncture. They knew after the lumbar puncture, that she was in fact ill, just had no diagnosis just yet. It would be three weeks in the hospital before the diagnosis of Anti-NMDA autoimmune encephalitis was confirmed. She experienced psychosis, hallucinations, clonus, tonic clonic seizures, periods of comatose, and several other symptoms.

After two months hospitalization, needless to say, this is when I decided I will not stop until we have answers. I would not stop looking for information that could be beneficial to my daughter and I knew there were people out there going through this as well. Thankfully, my sister (Dianna Sims) was helping try to find information when she stumbled upon International Autoimmune Encephalitis Society. I will just say, it was God sent! OK, OK, enough about us and back to the day of strength.

TCH AE Day 2 500x243 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's HospitalWe went to this convention, it was our first time attending something like this. My main goal when going was to get better informed by experts and individuals that have walked this walk. We got there a tad early and I do not regret it. When we got there, we sat at a table alone feeling a little awkward and maybe a little out of place. Things soon lightened up as we started to meet more people. The first two people we met where a mother and her 18-year-old daughter from New York. They were just plain out beautiful people. The daughter, we discovered was also fighting anti-NMDAr AE.  My daughter instantly felt that she was not alone in this fight and that there were, in fact, people that could relate to her. That was a hug to my heart. The people we met and all those who attended, caregivers, parents and patients were all struggling in the same way. All of us were fighting for the same cause, walking the same journey and we felt for the first time that we not alone. This was the first time I experienced that we do not have to fight alone. Being in the company of others who we could talk with who related and understood our situation because it was a shared experience.

TCH AE Day 8 145x300 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's Hospital

Nesrin Shaheen

When the convention started, Dr. Muscal spoke first. He spoke about the history of encephalitis and all the new findings, treatments that are available and the hope of a cure one day. He was intriguing and brilliant. He had information that I was glad to receive as I had not seen some of it before. The next presenter was Nesrin Shaheen. She spoke of her daughters’ journey and how they fought for many years before a correct diagnosis was made. She also spoke of some ancient history around encephalitis and had some awesome slides of possible encephalitis in that ERA. If a mother ever wins “Mother of the Year Award”, she would be that mother! She fought, she involved herself and, in the end, her daughter is succeeding well! She is my new role model (next to God, of course! Lol)

TCH AE Day 7 145x300 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's Hospital

Dr. Saxena

Next, Dr. Saxena (Psychiatrist) spoke. She discussed the psychiatric symptoms of Encephalitis. She went over a list of medications to help as well. Not many Psychiatrists are well informed about symptoms and correct psychiatric supportive medications for autoimmune encephalitis but she was! She made perfect sense. The last session we were able to stay for was the “self-care” session. In this session, patients as well as care givers were given a breathing exercise to practice. They also went over a check list that was provided to everyone in the room of different activities that they may be willing to do as to take a minute or two of the day to self-care. Though the patient is the focus, caregivers must also maintain a level of self-care. I think that this was very important as many of us have lost ourselves as caregivers and have forgotten ourselves and what some of our basic needs may be.  This was a real eye opener.

I have to say, I was a little skeptical and nervous going into this whole convention thing but, it really opened my eyes to all the treatments, the people going through the same thing and the possibilities that patients actually have! This is something I absolutely do not regret and look forward to attending many more as we are able.

Your generous Donations allow IAES to continue our important work and saves lives!

Why the zebra 2 - Attending the Day of Strength Autoimmune Encephalitis Conference at Texas Children's Hospital

When the judge has read the book…

When the judge has read the book…

May 22, 2019 | Julie Ann Fetch

ss 300x199 - When the judge has read the book...

Finally, some good news to share with everyone.

I just got a favorable ruling from Social Security Disability that I meet their criteria due to my having anti-NMDAr Encephalitis and other autoimmune conditions.I initially applied in 2015 and after a long battle with appeals and 2 hearings, I won!

Here are my take home messages:

1.     Apply for yourself, have someone do it for you, or apply for your loved one as soon as there is a diagnosis.

2.     Report all medical conditions, not just autoimmune encephalitis. Surprisingly, my case was approved more for my Crohn’s Disease and other autoimmune conditions than the anti-NMDAr, but all of these conditions were complicating each other.

3.     Don’t give up if you are at first denied. Appeal. Hire an attorney that only takes a small percentage and only if you win. I think mine only made $6000 from my case.

4.     Make sure your doctors write in the record the things you tell them about. Like fatigue, confusion, anxiety, depression, slurred speech, vision issues, etc. and give them exact examples of how it affects your everyday life. Better yet, write your list of symptoms out and ask/make them file it in your medical record. Or, track a “typical day” for a week or longer and show it your doctors. 

5.     Have others who live with you or observe you, tell the doctors what they see with their own eyes or ask them to write it down so the doctor can put it in your record.

6.     The biggest thing I learned in this process, is that they don’t award disability based on just a diagnosis. It has to be in your medical record how it is affecting you day to day to the point that you “couldn’t sort pencils” as my attorney always said. As we all know, before encephalitis is properly diagnosed and appropriately treated, “sorting pencils” is probably not even possible. (It still may not even be possible during recovery either for that matter!)

Keep up the good fight.

Oh, and my judge read the book “Brain in Fire”, so awareness is spreading everywhere!

j 223x300 - When the judge has read the book...


 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.


You generous Donations allow IAES to continue our important work and saves lives!

Learning Supports for Children and Young People with AE

Learning Supports for Children and Young People with AE

May 8, 2019  |  Alison Westerkamm and Missy Simpson

After a diagnosis of Autoimmune Encephalitis many children and young people will need specialized learning supports to enable them to succeed at school. This blog post explains what Alison Westerkamm discovered when navigating her way through the learning support maze for her daughter in the United States.

Thanks to the guidance and support IAES gave us during my daughter’s Individualized Education Program (IEP) process, our second meeting with the school was much more productive and they incorporated all of our requests!

We were finally able to get a bus home at 1:30pm that drops off at our house. During the first meeting, they couldn’t help us at all with transportation and we had to fight just to get noise canceling headphones for testing. Not signing the initial proposed IEP, was powerful in getting our concerns addressed. Schools often say they can’t when, in fact, legally they can and are REQUIRED by law.

Here are some other tips:

  1. Request a special education evaluation, as soon as possible and submit your request in writing. Schools have 50 school calendar days to complete it. The clock starts when they receive your written request. Once the evaluation is completed, they will schedule a case conference meeting to determine eligibility for services. The information you provide during the evaluation is equally as important as individual test scores. Don’t forget that evaluation results support eligibility for services and drive IEP goals. Also, request a copy of the school psychologist and any other evaluation reports, prior to the case conference meeting.

  2. Get letters from your child’s doctors supporting need for services. Provide information and articles about AE – but most importantly educate about AE and how it personally impacts your child’s daily functioning.

  3. AE should be covered under the designation of ‘Other Health Impaired.’ Schools may do a 504 Accommodation Plan first, but file under the Individuals with Disabilities Education Act (IDEA). The required IEP under IDEA carries more weight and has to be followed. Our daughter started 9th grade at her new high school in January, because she was hospitalized for so long during the fall. She started on a modified schedule with a 504 Accommodation Plan. We couldn’t request testing until she was a registered student at the school and started her first day.

  4. Familiarize yourself with special education laws and your parent rights before the case conference meeting. Consult with a local advocacy group.

  5. Know what kind of accommodations you want for your child, before going into the case conference meeting (e.g. audio/digital texts, magnetic locker key, teacher notes, chunking, testing free from distractions).

  6. Take notes or record the meeting. Everything you say does not always end up in their transcription of the meeting. It’s good when they know you are paying attention to everything and documenting it. I brought my laptop into the second meeting.

  7. Don’t feel pressured to sign the initial proposed IEP if it does not adequately meet your child’s needs. Tell them you need time to review it. Write a letter of parent exception to the proposed IEP. In it, state what you want for your child and why – support with articles/links. Make sure they respond to each of your concerns, within a 5-10 day time frame and include your letter in the second IEP meeting documentation. Don’t sign the revision IEP, until you see that it reflects the changes you want.

  8. If the meeting gets tense, it can feel like the school vs. parents. Definitely advocate for your child, but do so in a way that is respectful and courteous. Remind them that we all want the same thing, for my child to have the necessary tools to be able to learn and be as successful, as students who do not have a medical condition or disability. It’s important to say that even though my child may not appear sick, these are the symptoms and deficits he/she struggles with on a daily basis and what it may look like in the classroom. Liken it to the struggles of students with TBI and how the recovery process is similar.

I hope my experience can be helpful to someone else in our AE community.

When Alison initially posted the above information in the IAES Face Book educational group for patients with a diagnosis and their loved ones, another member, Missy Simpson added the following.

Really good information. Thanks for sharing.  A couple of clarifications worth sharing

  1. AE itself is not a qualifier for special education, even under “other health impaired”. The student must be functioning below grade level as a result of the AE to be eligible for special education. For example, a child with severe fatigue issues and seizures may still be working on grade level, but may very well need some assistance to maintain those levels.

  2. Many of our “AE kids” are more likely be eligible for a 504 plan, with accommodations needing to be put in place to meet their needs. Schools are still required to follow these plans! And if one accommodation doesn’t work – try something else!

  3. Be prepared to present accommodations that you know work for your child! There is a good chance the school may not have thought of some of the strategies that work for your child. Always think outside of the box when it comes to accommodations. As a former Assistive Technology Facilitator for a school system, I speak from personal experience.

  4. Recording the meeting is a great strategy, so that you can go back and listen later, rather than getting caught up in taking notes, and missing important dialog – but, you have to let the school know your intention is to record the meeting.

  5. Centers for Independent Living (CILs) exist in all 50 states, and include advocacy as one of their services, free of charge. Many CILs will provide advocacy services for parents of children with special needs. Find your local CIL and ask them!

72f61a 0052a1ef918d469c823a1e2cf296f914 mv2 - Learning Supports for Children and Young People with AE

As an advocate, I was once asked by my former co-workers, “Why are you on that side of the table?” that was exactly why! There should not have to be a us/them at the table. We should all be there for the same purpose. Sometimes you just need to drive that point home a little harder than others.

Websites that may help:

What is an IEP?

National Council of Independent Living 

A Guide to the Individualized Education Program U.S. Department of Education

  

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.

You generous Donations allow IAES to continue our import work and saves lives!

72f61a 073bf327a1da4d0bb27933fc2f4c741f mv2 - Learning Supports for Children and Young People with AE

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

Website Security Test
Translate »