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March 31, 2021 |Maureen Oosthuizen and Ayisha 

Message from the IAES blog staff:

The staff at IAES is honored to present to you a blog that describes the plight of AE perfectly. It gives form to the heartache, mental and physical destruction that AE can render to not only the patient but also parents and family. This is from the standpoint of a parent and a teenager with AE. This not only speaks to the pain and difficulty those with AE face but, also, the amazing spirit to rise above this disease and not let it define her!

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It’s been a rough 10 days.  That family member with the huge personality that everyone tries to avoid, moved in again…the one that takes over your household, no matter how hard you try to keep control. The one that makes everyone run around like crazy, makes everything spin out of control and for which you can do everything to the best of your knowledge and capability, but it just isn’t good enough! That family member, who you know, comes with chaos, no matter how well you plan for every possible scenario.  The one that always catches you with some kind of angle, the one you prepare yourself for mentally a hundred times over, but there is ALWAYS something you didn’t take into account – they always have something up their sleeve.

In our household, that family member is called Autoimmune Encephalitis (AE). It is a life form on its own. You are required to leave a dedicated space for it, almost like a shrine. It demands not only your space, but your time, your patience, your resources. The suitcase packed with Aunt AE’s belongings stands in the corner of the bedroom, even when she’s not physically there. But let’s face it, even when not there – she is still there. You keep her toothbrush and towel the way she requires it, just in case she turns up unannounced, like so many times before. You leave things related to her as she leaves them, because it’s Aunt AE, and you stay aware –but keep your distance, grateful for the break from her overwhelming presence. Plans get made around Aunt AE’s schedule and life gets lived around what suits her first. You get angry; you get embarrassed that she could be so arrogant. You get frustrated. But – she carries your name, has your DNA and will be part of your life no matter what. She will attend every birthday party and family gathering. She will turn up in full force for public appearances and you will not be able to hide or avoid her. And the possibility highly exists that she will ruin every special occasion in your life. But she is here to stay, part of you—and nothing you do can change that. You can try to move 5 steps forward and with one swing of the door—it flings open, and you hear  “I’m back!”… and you know, this is the moment regular life stops and plan B kicks in… for EVERYBODY in the house… I know you smiled as you met Aunt AE… you might even have recognized that family member in your own life.  The thought might have crossed your mind that if AE is like that Aunt, then life with AE can’t be that bad! Well, there is a secret. I learned a remarkable thing from an amazing, well known, international business guru once, on the topic of successful personnel management, in announcing major change or bringing awareness of disciplinary actions, you start with humor, a relatable story. You remind your audience of how unique they are, yet how we all seem to be similar in many ways – how interesting and effective we all can be if only a small change in perspective is applied. You flatteringly hook them, then you reel them in. And when they can find themselves in your story, you move from the lighthearted starter to the meat of the matter. Only when hooked, then, do you tackle the main course you plated, with the shock of reality, with expectation, with discipline, action, but first, you soften the blow before you destroy.  You smooth things over at the end of destruction with a hug, a soft cushion to land on. So today, in sharing my experience with AE, I will follow that recipe to a tee and do the same. Because how do I fall in the door with the reality of what AE really does, who it is and what chaos it brings to you? How can I be as brutal with you in my introduction of AE, as what AE was when it brutally introduced itself to my daughter, my family and myself? 

A formal introduction: 

I am Maureen and I am mom to an AE Warrior that was diagnosed in January 2019 at age 14. You will meet her in the paragraphs to follow, not only through my words and thoughts on how awesome I think she is, but also through her own words in describing the journey she has traveled and the person she has become because of AE. I think it’s right here, in this next paragraph that I need to explain that our story might be a little different than the ones you’ve read here before. 

There will be no mention of fancy scientific and medical concepts; we will not share much of the technical parts of the groundwork, the hours and days and months it took to get her an actual diagnosis, nor will you read here about the medical and chemical compounds of her treatments. Why?  Well, the answer is simple. We live in a small Caribbean country where treatments for autoimmune diseases discussed on this blog are not available or even registered on approved lists of medicines by our Department of Health and Medicine. We have no rheumatologist or immunologist officially and permanently practicing in our country. Most basic testing and equipment for testing isn’t even possible. Help, diagnosis and treatment for any autoimmune issues such as AE depend on your ability to leave the country for foreign soil – a bordering country that faces almost the same challenges – or – if you can, find your way to a medical facility in the United States. That said, a reminder that in our side of the world, medical insurance is not much of an option and medical aid is non-existent, not such is seen in first world / western countries.

Thus, we will tell our story of OUR JOURNEY into the world of AE from the perspective of a mom and a teen dealing with AE and its challenges while living in a developing country, with limited resources and medical challenges of its own.

Our family gets introduced to AE

We live our life in what most would see as paradise (to vacation of course, but not to live here full time). It’s a strip of land in Central America, where sea and rainforest literally meet in my yard. The country’s population hardly exceeds 350 000 people. A relatively proper trauma hospital is 3.5 hours’ drive away. We have less then 10 ventilator units available in our whole entire country.  In our area, an ambulance service only became available to the public in the past two years. What we call our go-to hospital, contains maybe 10 private rooms and 4 ICU beds. It’s in the same city 3.5 hours away where our journey with AE starts. 

 It’s in the same small city where a bright overachieving teenager attends a private school on a scholarship that she arranged for herself. At this school, 3.5 hours away from her home and family, she exceeds academically and in swimming and cycling. She spends her vacations on internships with the zoo and other Environmental Camp fighters and dreams of becoming a forensic scientist. She is being honored and awarded for her achievements thus far at a ceremony that I am on my way to, when I get the call. She collapsed at school. Someone thinks they saw her have epileptic like fits in her initial fall before she went down 3 flights of stairs and now, they struggle to get her to respond. I drive like a maniac. Never did I once consider that this manic behavior of mine might be the first, but it wouldn’t be the only. It would also be the first of hundreds of hours at a small hospital bed.

An initial 7 hospitals later, an endless number of tests, with some even more than 3 times.  The start of the illumination process is the worst. Until finally, our wonderful and caring doctor that started the journey with us, refers us to a pediatric neurologist in Mexico. We need answers, he says…and I can’t find them. His specialty, an internationally recognized leader in the field of intensive care medicine countless times awarded for his contribution to the world of critical care. Currently head of the World Federation of Intensive and Critical Care, and he hugged her as he said, I have no answers – we need to look elsewhere.  Discharged from the hospital and equipped with every possible test we could do; we start our first of many travels to a foreign country for help. In the meantime, while other strange signs and symptoms seems to be adding themselves to the strange list:  the seizures being the worst. They become more: more in quantity and more frequent; more varied and lasting longer, more violent and with more and more strange aftereffects.

Our first visit to the fancy hospital with all its modern medical equipment and eloquent staff in Mexico, yielded nothing much. No one can tell us why after seizures, my daughter might wake up with no ability to hear or speak or see. They don’t understand why her mobility is slipping away and exhaustion is the order of every day. They don’t know how frightened I am, as a mom, of those seizures and the devastation they leave behind. How can I encourage her not to fear them if I just want to run when it happens? She experiences time lapses and gets locked up in a world we left behind many, many years ago. She will wake up not recognizing anyone around her, being familiar only with the people places and routines she had as a four-year-old. Her mobility slipped away and as she stated: her battery seems to never charge to more than maybe 15%. And here we are, with their modern big machines and their extended knowledge: and still can’t find answers. With a prescription for anti-seizure meds in hand, we are sent home again. Here, between clinical walls and suites, I encountered that these people think that not only am I crazy, but I tolerate the tantrums of a teenager. 

Despondent, we start the trek home again.  On our road trip home, she gets sick again. Seizures are out of control and we end up in the ER of yet another small hospital in a rural area of a foreign country where the neurosurgeon is stunned, once again. A 5 day stay here ends in disaster and we are forced to make our way again to the fancy, big city hospital and its eloquent staff and amazing technology. Maybe this time the big machines and clever people will come up with reasons and plans. By this time, I have had to do CPR on my kid to keep her alive, I have watched her heart stop and her lungs refuse to breathe more than 3 times. I have heard her tell me worms are eating at her brain. I have watched her fight back tears, because she doesn’t recognize who she is nor those closest to her. She cries herself to sleep for loved ones that have passed on, because in her 4-year-old reality, she has her cat, her teddy and her grandpa that fixes everything. And making her drink medication is a nightmare – because as a kid, her mom taught her to take no medication from strangers and never take pills or tablets, only the blue flu medication or the red fever medication are for children. And children only get gummy vitamins. Those same things I taught her to keep her safe so many years ago, came back to bite me when I least expected! I have seen her walk into this hospital, but lose feeling and mobility in her lower body overnight. I have watched her have tremors in the right side of her body equal to that of a Parkinson’s patient, to the point that she screams in pain and exhaustion. I have watched her lose her hearing and sight for 17 days before it slowly returned after having seizures. And finally, I have seen a psychiatrist wonder about a possible diagnosis of Munchhausen by proxy for me and psychological diagnosis for my daughter. 

 I felt like I had watched her die and be brought back to life again and again. She returned from the dead, because the tiny Spanish neurologist had the hardest possible words to tell me. She told me that there was one more possible treatment that she could suggest, but if this did not work – that she gave up. That treatment she referred to was the life giving liquid in a glass bottle called IVIG. After the 11th stay in hospital – the longest stay in hospital so far – a stay of three weeks – we finally got to leave Mexico with a wheelchair and a diagnosis: Acute Poly Reticular Neuropathy and Autoimmune Encephalitis.

What we didn’t know was that there would still be hundreds of tremors, a total of 27 hospital stays in 2 years and a balancing act requiring the skill of a brilliant acrobat.  It was a bittersweet day, the day we left that hospital. There now was a paper – on this paper it finally had named this thing that had happened to my superhero and my family. But a paper was only a paper. It wasn’t and still isn’t a cure. The road we travel as a family hasn’t become less complicated after being diagnosed. Even with the introduction of steroids and immune suppression meds, we still fight a battle. I say we fight – because you might think that it’s a person being diagnosed, but it’s not. In the case of AE – it’s a family that gets diagnosed. It affects and changes everyone.

How has AE affected me as a mom? 

Well, there’s the days I blame myself, of course, if I only know what I did wrong. After all – she came from my DNA, she has my genes! There are the days I watch her with immense pride, she fights hard for the good days and for AE not to consume her life. There are the days I can hardly see through my eyes, because they swim in tears all day for what she has to go through. I struggle to find balance – I have two other teens that do not require AE attention, but deserve dedication and attention just the same. We no longer have a social life, it’s just easier not to have to explain and when I do go out, I worry more about what is happening back home, while I am not there, than enjoy the pleasures of where I am. I constantly wait for that call.  I don’t plan vacations or spend money easily. I feel too guilty. Because I know, those funds will soon be needed for a hospital bill. We moved here initially to have a sun, sea and sand filled, uncomplicated, simple life, but simple, uncomplicated Caribbean life flew out the window when AE moved in.  I find myself spending my days doing EMS courses and increasing my knowledge and skills in emergency response and pre-hospital care. I have learned to make notes, lists and video clips of episodes, signs and symptoms, because in explaining to medical minds, my word isn’t enough.  I have learned to leave the routines and responsibly of ordinary life for tomorrow when today is a good day. More important and fun things should be done on a good day.  I have learned the functions and importance of vitamins and minerals in aiding as building blocks and planning proper meals to keep her as healthy as possible. I’ve lost my job and lost my income a few times over, as a single mom with a sick kid. I’ve learned of the secret powers I have in giving injections into a small frame with no muscle tissue, and not to bruise or hurt. (I still don’t know why it hurts me more to inject her than it hurts her to get injected!) I have learned its never a good day to give up, and if you dig deep out of desperation, you are always stronger than you think. I have learned that it still takes the love of community to raise a kid……and finally, I learned that I gave birth to a superhero.

What would a typical flare up look like for her? 

The first night she might spend wrestling a major headache. The incredible body aches and inability to move her joints will follow soon. She will spend the second day in bed. Unending exhaustion winning the power struggle. When friends or loved ones come to check on her or visit, the mask goes up…the physical one and the mental one…and she tries her utmost to hide her pain, exhaustion and irritability. By the next afternoon she will be rolled up in a little ball on the couch and the intense nausea starts. She will struggle to focus, and the world appears lopsided. Nothing helps for the intense headache, nothing takes away the joint pain, nothing helps the brain focus and then one by one the extremities stop working… first, the legs and last in line, the neck. She becomes flaccid.  She will take short naps and various things can present itself when she wakes up such as waking up with an intense tremor, a shaking like that of someone diagnosed with Parkinson’s, mostly on the right side of her body. Vomiting bitter tasting bile, imbalance or complete loss of feeling. Sound would be muffled as if under water. But still, she will keep her sense of humor, knowing that this unstoppable and uncontrollable shaking usually indicates that big bad seizures are coming, all we can do is wait. She will carry on with normal activities until she just can’t anymore.

Life gets adjusted on days like these. Siblings swap out chores. She can’t hold things in her hand that well and most days can hardly stand by herself. The sicker she gets, the weaker she gets, the more we are all on edge. Less laughs, less noise, less leaving the house for any reason…the sicker she gets, the more the other two siblings automatically step in to help where they can. They each know their routines when it becomes a life and death crisis. One is responsible for clearing a pathway for EMS, the other phones grandma and the ambulance, if necessary. Mom does damage control, mom things. Most of the time, walking is impossible, unless it means grandpa or I do the weight bearing part, and she hangs on and shuffles her feet. Hours and hours of sleeping…and even so, there is no relief from the exhaustion. Sometimes she wakes up to a world of silence and solitude. It takes hours and hours before you hear her use her voice. Her sentences are mostly three words long and leaves her out of breath. We wobble to the lounge so she can eat and feel part of family life for a short while, but the plate of food goes untouched. All that made its way to her stomach is glass after glass of water, and a cup of chamomile tea. She asks to go back to her bed, and we wobble our wobble waltz together.

It’s been two years of wobble waltz around the house when this happens, so we are good at it by now. I put her to bed, and she holds on, the way she did when she was two or three or four and had to fall asleep again after a nightmare. I lie down beside her, and she snuggles. I love snuggles. But these kinds make me incredibly sad. Just before she falls asleep again, she pounds her chest or head and tells me how sore it is. It happens all the time in flare ups. Chest and lung muscles contract and spasm…just like her hand and leg, even though we can’t see it. She falls asleep and silently the rest of the house carries on with being, waiting patiently to see, when she wakes up…what senses will work, what will not…and we wait on the unspoken reality of how each one will adjust their role to accommodate the unruly, selfish, strong-willed, inconvenient and uncontrollable family member called AE. 

 On the days that are in between good and bad, she will wake up after a few hours’ sleep when half a human being would be found standing in the kitchen, eyes wild and movements robot-like. Hey, my love …are you awake? …my words will meet a confused face…and tears will start flowing again. I got lost, she will say, and her reply will break my heart. “Went to bathroom. Can’t find my bed.” I will dry the tears, mine and hers. I will be grateful she recognizes me, even if she doesn’t know where she is. It’s better than the few times that she didn’t recognized her loved ones and siblings for days. Her legs worked! That will be what I think to myself as I tuck her back in and she holds on for dear life…. Maybe tomorrow it’s over…and silently, with no discussion needed…. life will resume again…normal life…when a normal day does resume. When everyone does their normal chores, when everyone is required to use their own feet…when AE leaves our house in order for a few weeks…. till the full blown ‘ I’m back!!!…stops us in our tracks and plan B protocol falls wordlessly in place…. again.

From the perspective of my superhero daughter after one year with AE:

Dear AE,

Autoimmune encephalitis, neuropathy, high functioning O.C.D, anxiety, depression, functional neurological Disorder, AFM, and any other diagnosis doctors have come up with:

14 years old. What a great age to be alive, guess what … NOPE. High school, new experiences and the best four years of your life… NOPE. Parties and events, a social life… NOPE.

Now, this post is long overdue, trust me I know, I have written this post over and over and over again but how do you begin to explain 27 months of living hell with an illness your medical teams in 3 countries aren’t agreeing exists or that you have?

How do you tell people that you aren’t trying to be rude by not answering messages or leaving them on social media, but you just don’t have the strength mentally nor physically to respond to all the questions they have?

How do you say that just opening your eyes in the morning knowing you have to deal with pain, sadness and hurt over and over again is exhausting and just wishing that it was a dream you would wake up from?

How do you say taking medication that drains you, makes you vomit, makes you cry and outright turns you into a zombie is what you wake up to every morning and say goodnight to before you get to bed?

How do you tell people the reason I may not contact you or show up to events you invited me to, is not because I’m uptight or snobby, but because I don’t want to be seen in public on a bad day when I’ve been crying and have raccoon eyes and look like I haven’t slept in days? I don’t want to be seen in a state of tremors and seizures and have to explain what happens and why.

How do you tell someone that you don’t mean any disrespect, but you don’t want to hear about the great day they’ve had with their friends or where they went, because you’ve been stuck in either a hospital bed or in your home for months on end and even just normal breathing feels like it’s too much to accomplish?

How do you tell people that needles no longer phase you, to a point where you find veins for nurses to take blood from, because only you know how and where to poke? Others lose count.

So, I say thank you to everyone who is patient and takes the time out of their day to message me and ask me how I’m doing and if I don’t answer I promise I’ll get to it maybe about 6 years from now, just give me some time.

BUT:

My chronic illness will not define me!

My chronic illness will not consume me!

My chronic illness will not be who I am!

I am still the Ayisha you met many years ago or even recently.

Just with a new point of view on life.

Ayisha’s perspective after two years with AE:

Here is to two years of finding a new perspective. I don’t remember much about how I felt on this day last year or 2 years ago. I know only the ins and outs of consciousness and the sharp pain shooting all over my body. But the people who have been there from the beginning will forever remain in my memory.

Here’s to Salima for picking me up off the ground where I passed out and waiting with me in the sick bay until someone could come get me, and the rest of my class who refused to leave my side. To doctor Hidalgo who made even the worst of times in hospital feel like home, to the nurses who became part of the family and always made me smile, to my amazing family, friends, community and school for showing me that it truly takes a village to raise a child. To Roselyn and Kyla who made me laugh until I couldn’t breathe. To Maddy who took the day off school to bring mint chip ice cream and Daniella who sat by my bedside helping me make a carrier for our baby egg project. I cry as I type this, reminiscing on the all the memories, I have of the past 2 years, to the friends I made and lost, to the ones who started my journey with me and are no longer here to see me find my way.  Your life stories will never be forgotten for every single one of you hold a place in my heart.

These past 2 years have not been easy. I might not have said it but there were many a times I wanted to give up, sit in a corner wallowing in pain and just hope at some point it would all go away. Yet, every time, my mom was there to pick me right back up again. To every tear you shed and every time you slept on a couch in my hospital room, to all the pain you made better and jokes you told and let me not forget the muscles you built up dragging me around the house and pushing my wheelchair. Mom, I take my hat off to you, you are the strongest person I know and the most amazing Mom I could have asked for.

To everyone who prayed for me, I cannot express how much love and gratitude I have to share, and I pray that for every battle you face in life the good deeds you have done overshadow the bad. To every stranger who stared or ignored my presence because they were too afraid of what they might say, thank you for you only made me stronger… furious sometimes but stronger. To every person who smiled as I wheeled by, thank you, your smile made my day a lot better. And to everyone who never gave up on me…. the biggest thanks go to you. I wouldn’t have made it through this time without all of these people, I’m sorry I can’t mention you all by name, but you know who you are.

The one thing I can say for certain about these past 2 years, is that I wouldn’t have changed a thing, my journey will someday be the guidelines for someone else to follow and, hopefully, make it just that much easier. And last but not least to AE for kicking my butt and keeping me on my toes, without you I wouldn’t have found my new appreciation for life and the strength I now have in my faith… so thank you.

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 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

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

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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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