She was diagnosed with Anti-NMDA Receptor Encephalitis on November 5, 2019. She was 13 years old then, and turned 14 on March 15 this year.
Our healthy daughter was showing the exact opposite of herself. She was very healthy and athletic. She has a blackbelt in Taekwondo and was bagging gold medals left and right in combat tournament.
All the standard symptom of encephalitis were there. It was very hard to understand and we were very shocked to digest the sudden alteration of our lives.
The early recovery period was the toughest. The IAES Facebook group witnessed how scared and frustrated we were as her parents. She didn’t sleep for 2-3 days. And when she did sleep it was only for 5-6 hour at a times. Often she had tantrums. Crying, shouting and there were times that she just snapped and hit anyone in our house.
Today, is June 1, 2020. Almost 3 weeks that she has been showing very good behaviors. She sleeps on time now and for a good 8-10 hours. Our house is filled with laughter again. She has become funny again. She loves playing with her dolls again. Art, music and movies are her pastimes. Unlike before when she could not sit for more than 5 minutes. She takes her medicine and milk by herself now. She can now take care of herself in the bathroom.
This illness is too much and no one deserves it. Many people helped us during the hard times. And we cannot thank them enough, especially those who prayed for us. Who helped us to understand her situation. And of course, the IAES Facebook group. It helped us know more and understand more. And I thank God for the everyday miracle.
Your generous Donationsallow IAES to continue our important work and save lives!
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.
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.
August 4, 2019, was the day that changed our lives forever—one that we call the perfect storm. A few weeks prior to this day, my daughter Brynn had turned two, with a baby sister born a few months before.
We noticed some weird behavioral changes as I returned to work from my 12-week maternity leave. Brynn is my first child, so my thoughts were immediately, “Wow. Two-year-olds are tough.” I kept asking my coworkers and friends that had been through this, whether this was normal, and they assured me that it was simply the “Terrible Twos.” They promised me she would get used to my working again. They even commented, “Wait till she turns three… it gets even worse!”
Brynn had been a very mild-tempered, funny, happy-go-lucky child that I really never had any behavior issue with. Developmentally, she was ahead of schedule: speaking full sentences; knowing numbers and colors; and speaking and understanding a good amount of the Spanish language.
As a week went by, she started not sleeping through the night, tantrums started becoming inconsolable, and exhibition of impulsive behavior. Starting on a Monday she vomited and her appetite changed. My husband, observing very subtle movements like Brynn cocking her wrists outward. He took me aside on Wednesday and said, “It’s almost like she is autistic. Additionally, her behavior towards her cousins changed. I remember my sister and I laughing under our breaths because she was in a RAGE yelling and screaming at them! By Thursday, my mother-in-law reported to me that she was barely eating. She had even turned down a Popsicle in the bathtub which she looks forward to every night!
It is truly the hardest thing as a parent to decide when to call the doctor, you never want to miss anything, but at the same time, you don’t want to be one of those parents that take your kid in for every little thing. My husband and I decided that since I had the day off on Friday, It would be a good idea to just take her in to make sure everything was ok. Throughout all of this, she never spiked a fever!
By Friday morning, she was looking pretty rough. Little did I know, this was the last day I would hear her sweet little voice for seven weeks. At the pediatrician’s office, I explained what was going on. They did the full exam including looking in her mouth. As a dental hygienist, it’s normal for me to observe her mouth regularly, and I had seen nothing weird. Her nurse practitioner stopped and said, “Do you see this little white dot in her mouth? This is very common. Your child has Hand-Foot-Mouth disease.”
She further explained that this is why she wasn’t eating because it is very painful. She also stated to me that it would probably get worse before it got better, and this virus has to run its course. She instructed us to make sure she was drinking fluids and not to let her get dehydrated. On Saturday we laid low, gave her some Pedialyte and began syringe-feeding her liquids and had to bribe her to get a couple drips down. The next morning, I ran a quick errand and my husband stayed home with Brynn. As I was sitting in the parking lot, my husband FaceTimes me, saying, “She is unresponsive,” as he lightly moved her face from side to side, calling her name, all without her making eye contact.
I have never shoved groceries in my car so fast. I instructed my husband to get dressed and I will be home ASAP and we will be taking her somewhere! I immediately got on the phone with my best friend who happens to be the nurse practitioner at the local pediatric urgent care clinic. She said, “Come on in and we will check her out… she is probably just dehydrated. We will give her some fluids and see how she does.” When I got home, Brynn had perked up as if nothing was wrong and I questioned my thought process. We chose to proceed, thinking, “Better safe than sorry!”
We arrived at the clinic and the nurse practitioner agreed that she didn’t seem normal and started an IV immediately. Upon observation, the doctor noticed her eyes were rolling back in her head and noticed unusual movements. They called an ambulance right away due to the fact it looked like seizure activity. I was taken back by how fast everyone was moving and thinking, “OMG, is this really happening! What is going on? Our worse nightmare was coming true. Something is wrong and we have no idea!” We were rushed to the local hospital and there they did a MRI, spinal tap and drew some blood. Everything came back normal, except a herpes 6 virus (a/k/a, Roseola which every kid under the age of five comes in contact with and fights off) which was wonderful, except no one could explain what was going on. The doctor did state that it seemed neurological, but he couldn’t put his finger on it exactly.
From here started a seven-week journey to the world of a medical nightmare with Autoimmune Encephalitis. We only stayed at the first hospital for two nights, due to the lack of attention my daughter was getting. They initially placed her on EEG machines to watch her closely for seizures, which she had none! They treated her for the herpes with a high doses of Ganciclovir, saying it was to risky to do steroids. Getting a doctor to answer any questions or return to our room was a nightmare. There was no infectious disease doctor or rheumatologist, and getting a hold of a neurologist was a chore.
The second day I kept hearing meningitis/encephalitis, though no one said this to me directly, nor could explain anything. At this point, I had not had a meal or slept. I felt like no one was doing anything and I was up all night researching on Google different signs and symptoms. I got wind from one of the doctors that a transfer could be in place if I wanted, to which and I replied, “Yes, let’s get outta here!” This was the best decision I ever made.
The next day we were transferred to Arnold Palmer Children’s Hospital in Orlando where a plethora of doctors asked all the right questions. They ran about 100 different test to different labs, and I could tell they were really working toward a diagnosis. No one had a clue until a Rheumatologist who had previously worked for a doctor that had a lot of experience with patients with AE. She strongly suspected the NMDA Autoimmune Encephalitis but we realized for the test it takes over a week to confirm because it has to be sent to the Mayo Clinic.
They were actually very confident with this diagnosis that they started with very high dose of Solu-Medrol and IVIG for a couple of days. Brynn at this point was in bad shape. They attached ” No-No’s to her arms so she could not pull the feeding tube out. Her eyes were rolling back in her head, she couldn’t sit up, and had this movement disorder which is very common with AE. There were days she went without sleep and then days all she did was sleep! It was so scary to watch your child go through this as you helplessly sit on the sidelines, praying the doctors and nurses are doing what’s best for your child. Then, the diagnosis came back positive for NMDA Autoimmune Encephalitis, at which point the doctors decided to treat it aggressively with five rounds of plasmapheresis and two rounds of a chemotherapeutic drug called Rituxan. We spent three weeks in the ICU and another two weeks on a stable floor weaning her off the drugs, and beginning PT, OT, speech and music therapy. Brynn had reverted back to a baby: sticking things in her mouth; moaning to try and communicate; and crawling on the hospital floors. Around week five, she became a two-person job, changing diapers and keeping her from getting tangled around all the cords to which she was attached.
To make this whole experience even more challenging, Hurricane Dorian was headed to our hometown of Melbourne, and we had a three-month-old infant being passed around the family, driving freshly pumped milk back-and-forth. I fully believe the only way we made it through this terrible nightmare was the support we had from our friends and family. Truly, we would not have been able to do it without them. Kudos to the Ronald McDonald house that housed my family as they came to visit to stay long weekends so I got to see my infant.
Daily, we saw subtle changes. Brynn became stronger and actually started to walk before we changed hospitals. That was the best day ever seeing her up walking, though she was very unsteady. Little did we know, this now presented us with new challenges as she became more difficult to keep in a bed or hospital room.
Our last stop was we being accepted into a rehab facility across town at another children’s hospital. Here she learned how to eat and bathe, and she started saying words again the very last night we were there! What a relief my kiddo was coming back to us!!! Doctors to this day can’t tell us where we will be in the long run or how long it will take her to fully recover, but we have high hopes with positivity and a heck of a support system that works with her everyday to be all she can be.
That concluded our seven weeks and we finally got to come home. I was a little nervous because we had so much help and proper tools to keep her safe at the hospital. We continued at home with occupational therapy and speech therapy until the end of the year. Brynn was back! Doctors would like to still remain on monthly IVIG treatments for one complete year and supplement with Rituxan as needed. All of them are amazed by how fast she snapped back from this disease. I can honestly say that it was because of a fast aggressive treatment, attentive doctors, and a strong support system full of love, patience and positivity that pulled this little girl back. Life is way better than we had projected at this point. The monthly IVIG treatment is rough as my daughter hates getting the IV. Hopefully we can look back at this and say, “Wow, that was just a bump in the road.” Until then, we will just keep our heads up and plug along!
Your generous Donationsallow IAES to continue our important work and save lives!
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.
There are moments where you are enjoying life and never think that anything could go wrong. In December of 2015 our family was hit with a crazy oddity that was nothing we could have ever dreamed.
It was Christmas break and thankfully I took the time off to be home with all my kids while they were out of school. My oldest is Elaine, whom we all call Lainey. She had just started working her first job with me at the local call center. I took her for the first late-night shift she ever worked on December 28. The next morning was when hell began and didn’t stop until late April/early May of 2016.
On December 29, Lainey woke up and wasn’t quite right. As a parent knowing how the young kids are, I started thinking maybe she was just tired or that maybe she tried drugs to be cool with the people she worked with the night before. When she got up, she was out of it. Throughout the day, she kept seeing things that her brothers and I didn’t, as well as making weird statements. I literally thought my daughter was a bit crazy.
By the morning of December 30,, she was much worse. She didn’t know where she was or that she had to get to work. When I had her get up to go take a shower, I found her outside in the cold, without any shoes on, trying to get in my car to take her shower. Once I was able to get her inside, I had to shower her myself because she acted like she had no idea how to clean herself.
By this point, I was so concerned that I called her work and told them she was sick. I then drove her to the ER in St Joseph, MO. Once there, they took her back to the area for people who may need to be admitted to a psychiatric ward. They had her strip down and put on a hospital gown. A guard sat outside her room and it took several hours before they confirmed anything. They took tests and ruled out drugs as well as alcohol. The doctors had no true reason as to why my beautiful angel was acting so crazy. The only answer they could give was that she had a UTI and when elderly people have these it can cause dementia for them. So, they prescribed some meds—one of which I couldn’t even get for 24 hours after this visit—and said if she wasn’t better in two days to come back. It was like they knew I would have to come back.
We went on about our days as usual as we could with a teenager that was deteriorating before our eyes: she barely slept; her paranoia worsened; and, late at night while home, she had a couple moments of aggression. When December 31 came around, she couldn’t dress herself, remember how to eat or drink, and barely remembered how to walk. Our family always got together on New Year’s Eve and everyone knew that something was wrong with my sweet girl. I made the decision then, that if by morning she hadn’t shown any signs of improvement, I was going back to the hospital and not leaving until they could help my daughter get back to herself.
We arrived at the ER again in St Joseph, MO, and started a multitude of tests. None of them came back with any signs of what could be wrong. The doctors looked at me and said they had no idea what was wrong with my daughter. That was not good enough. I told the doctor that something is clearly wrong and to figure out where my daughter could be sent to get answers that wasn’t a psychiatric ward because I knew in my soul that she was not crazy. By 9 p.m. that night we were sent via ambulance to Children’s Mercy. I had no idea at that moment, that this was going to be the place that saved my daughter from an evil no one else would have ever recognized.
Early in the morning on January 2, I met the men who were sure they knew how to help Lainey: Dr. Aalbers and Dr. Allison. They explained to me that they were sure from the symptoms that she was presenting with, that they wanted to test for this rare illness called Anti-NMDA Receptor Encephalitis. I had to agree to let them attempt a spinal tap for them to get the fluid that was needed. They also added a bunch of wires to her head in order to check brain waves. Once I spoke with them and agreed to all the testing, I of course did research on what they had discussed with me. After reading articles on the internet, I was convinced that these two extraordinary men had found the way to heal my baby and get her back to her normal self. We spent months at Children’s Mercy in Adele Hall. On January 11, we received the result from the CSF, stating that Lainey truly had Anti-NMDA Receptor Encephalitis. This is when we began all the treatments that would get this disease under control.
Who knew that the antibodies in your own body could backfire making them attack the brain cells instead of the actual cells that were caused by an illness? Most of the medical documentation stated that women would need to be screened for teratomas as this would be the leading cause of what brought on the illness. Unfortunately, Lainey was negative for teratomas. We still have no real reason as to why she now has Anti-NMDA Receptor Encephalitis, except that someone higher than us knew that we could handle anything they put on our plates.
At one point I was certain that the doctors had no idea what to do, so we had a medical conference and one of Lainey’s doctors that week reached out to Dr. Dalmau. This doctor received an email back from the man who first diagnosed this and was told that what was being done is exactly what he would do. So, we kept to that course moving forward from that point. It took another 75 days after this before we started to see Lainey “wake up.”
They call it waking up because most patients have no memory of anything that happened to them while deep in this disease. That is true for my daughter. Her main memories of how she became sick and most of her hospital stay are from my stories to her. I have told her every detail she has asked for. To this day, she still will take me with her at times in order to help with information that she doesn’t remember well.
We got close to so many doctors, nurses and care assistants. It was a long hard battle. Lainey worsened before getting better. We spent many days in heightened paranoia states. She had more than her share of aggressive moments, which eventually meant that for the safety of herself and others, the doctors had to start using restraints. I was super happy that stage didn’t last long. There were weeks of two steps forward with six backwards.
Lainey experienced many different treatments. She took Rituxan twice. Had weekly treatments with Cytoxan. She was on melatonin, steroids, Ativan, Benadryl, Zofran, clonidine, IVIG, trazadone, and Cellcept. I am sure I forgot some of the meds that got her back on track to a state of remission, but the main ones are here. She made it through multiple MRIs, EEGs, spinal taps, PT, OT, speech therapy, and even having her eyes checked on from all the steroids she was on. We were released on May 4 to Lakemary in Paola, KS. She was at this facility for 23 days before being released back to my care. We had to be sure that she was not going to be harmful to herself or others before coming home for good.
That summer she spent as much time with her brothers and her horse as possible. She had her 18th birthday and was excited when she was able to go back to school with an IEP. She fought hard to get back to herself and once that happened, she did everything she could to prove that she would beat the odds. She attended her senior prom, lots of dances, and was featured in St. Joseph Newspress for showing that she could graduate with her peers despite all odds.
Since graduating from high school, she has completed all treatments for her illness and is currently in remission. We call it remission because at any point this horrible devil could come back and Lainey has the possibility of having a relapse. She worked full time and at one point held down more than one job. Lainey is back to her normal stubborn, hardheaded self. She gave birth to most handsome little boy on November 13.
All of these things were items that doctors said may not ever happen for her. At one point we weren’t even sure if she would ever “wake up” from all of this. Still to this day, she doesn’t remember much of her hospital stay at Henson Hall. Lainey remembers a lot of her nurses and care assistants because they were some of the ones there as she was coming out of the so-called fog that this disease causes in the brain. We still give big shout-outs to all our people at CMH and are more than thankful to have found people who knew how to help us. She still has lots of issues with her memory, some of her muscle spasms are still there, and when she is sick, she knows I will still ask all the same questions that she had to answer when she was sick. I truly believe that once you experience something of this nature it builds sort of a post-traumatic syndrome in the people who are caregivers.
I never stop worrying or looking for signs that she may be going into a relapse. I have a hard time when we don’t speak often and get worried more than I probably should. I do, however, say a prayer everyday thanking those above that she is here and healthy, living a normal life that I was told to prepare for her not to be able to have. I also say prayers for all the other warriors afflicted with this deadly illness.
We give thanks to all her doctors who helped us through this at Children’s Mercy in Kansas City: Dr. Aalbers, Dr. Allison, Dr. Cooper, Dr. Tobler, Dr. Coffman, Dr. Cation, Dr. Becker, Dr. Lepichon, Dr. Hema, Dr. Korth, Dr. Hall, and I am sure there are some I can’t remember.
CAs and Nurses: Lauren, Kelsi, Brian, Chrissie, Rita, Courtney, Julie, Kaitlin, Heidi, Steph, Rachel, Shannell, Alisa, Terri, Laura, Elizabeth, Codi, Lena, Skylar, and Ann. Just to name a few.
Child life – Gretchen and Sandy. OT and PT. Speech: Gayle.
Lakemary – Marcy, Mary, and Courtney. Plus, all the house staff and teachers.
Your generous Donationsallow IAES to continue our important work and save lives!
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.
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:
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 Donationsallow IAES to continue our important work and save 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
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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