My Daughter’s Diagnosis—and Her Recovery

My Daughter’s Diagnosis—and Her Recovery

August 5, 2020 |By Kelly MacDonald Marrero

2 year old brynn 2 225x300 - My Daughter’s Diagnosis—and Her RecoveryAugust 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.

2 year old brynn 225x300 - My Daughter’s Diagnosis—and Her RecoveryOur 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 Donations allow IAES to continue our important work and save lives!

 

seal - My Daughter’s Diagnosis—and Her Recovery

 

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.

Trivia Playing cards 3 FB 500x419 - My Daughter’s Diagnosis—and Her Recovery

Be a part of the solution by supporting IAES with a donation today.

 

why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

     

    Elaine’s Unknown Fight

    Elaine’s Unknown Fight

    July-8-2020 | Danielle Davis

    elaine-smith

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

     

    seal - Elaine's Unknown Fight

     

    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.

    Trivia Playing cards 3 FB 500x419 - Elaine's Unknown Fight

    Be a part of the solution by supporting IAES with a donation today.

     

    why zebra - Aphasia as a Symptom of Autoimmune Encephalitis

       

      I’m Looking Forward to Living the Rest of My Life after Autoimmune Encephalitis

      I’m Looking Forward to Living the Rest of My Life after Autoimmune Encephalitis

      June-10-2020 | Gary Walters

      December 2019

      Gary Walters 2 281x500 - I’m Looking Forward to Living the Rest of My Life after Autoimmune EncephalitisThe last two years of my life seem to have disappeared from my memory. Gone. Holidays, weddings, a funeral, birthday parties, Christmas and New Year. Friends and family keep telling me things I’ve done and the way I’ve behaved, some of which are very embarrassing to hear. It’s just not me.

      This is the result of the disease Autoimmune Encephalitis (AE), the symptoms of which I was clearly exhibiting without my even realizing. Hallucinations, involuntary movements (which developed to 20-30 movements over four or five minutes), insomnia, loss of inhibition, memory loss and finally seizures, none of which I can remember. Apparently, I had two massive seizures at work (a Secondary School where I teach Physical Education), one of which resulted in the police being called due to my resisting all help. I’m told this was the last of a number of smaller seizures as the disease continued to develop and take hold.

      The last seizure resulted in hospitalization for more than two months and being seen by a number of doctors and specialists who put me through a whole host of MRI scans, EEG’s, blood plasma analysis and other tests I don’t recall. I was eventually transferred to another hospital, where a specialist identified AE straight away, where I stayed and was treated for more than three weeks.

      Lots of my friends and family traveled to see me, none of which I can remember and feel very guilty about admitting to. I do have a memory of very small flashes of shouting inappropriate comments at some female staff and having to apologize the next day and some very small flashes of walking around on other wards in my underwear looking for my ward. Again, it’s very embarrassing and most of it I can’t fully remember.

      I’ve been told of other embarrassing events I performed, which eventually resulted in my being placed in a room by myself and given sedatives to help me “relax.” I was given all sorts of medicines, went through a whole host of tests and discussions with specialists on how to treat and control this very rare disease, and no one knew the right answer. It was a case of controlling the disease from worsening and monitoring my condition very closely.

       

      Gary Walters 3 300x300 - I’m Looking Forward to Living the Rest of My Life after Autoimmune EncephalitisEventually, I was transferred back to my local hospital and continued to have a wide range of tests, blood samples were taken every morning to be analyzed and, after three more weeks, I was released to go home with a cannular inserted into a vein in my wrist with 24 tablets to be taken during the morning and 12 at night. I also received IVIG treatment to boost my immune system every morning at the local hospital.

      I am now awaiting a decision from my consultant regarding the next steps. He has to speak with specialists in London as he is also unsure about what to do. I’ve been signed off work until after Christmas, which I also find frustrating as I feel back to 100%, but deep down I know that is the right decision.

       

      I hope this article gives other sufferers of this very rare disease assurance there are other people out there experiencing similar symptoms of this confusing and inexplicable disease for which hopefully leads to further research and ultimately a successful pathway to complete recovery.

       

      Gary Walters 1 300x300 - I’m Looking Forward to Living the Rest of My Life after Autoimmune Encephalitis

      May 2020

      Since I wrote the above piece back in late December 2019, I’m feeling back to 100%. The doctors, specialists, occupational health therapists are all very surprised how quickly I seem to have fully recovered, and it’s all down to the support and treatment I’ve had.

      It’s now early May, I’m still taking a large dose of meds including Lamotrigine, Levetiracetam, Prednisone, Adcal etc, which to be honest it’s now a case of a gulp of water and down the hatch. It’s now about 10 tablets in the morning and eight at night — massively down from 24 and 12.

       

      I went back to work in early January on a carefully monitored and phased return, building back to full-time before the dreaded COVID-19 hit. I’m not going to lie, going back to work has been tough. The school I work at has moved on, which has is expected in the 12-18 months I’ve been in and out (mostly out). Different students. Different staff. Different expectations. It’s been hard for me, but harder and more frustrating for the brilliant people I’m lucky enough to work with.

      When I got back into work I tried to pick up where I left off. It didn’t work, because my expectations of myself are so high. I wanted to know why, how, what had happened to this, that, and the other. I tried to rush back too quickly, and it didn’t work. I wasn’t listening or asking for help enough.

      I thought I could pick up where I left off, but I couldn’t. My brain needed time to click back into action. Those billions of neurons needed time. Time, I thought I didn’t have. Fortunately, my employers have been incredibly understanding. They’ve supported me so much, something for which I am eternally grateful.

      This is where I know I’m so lucky. I’ve read so many stories of people that are struck with different forms of encephalitis and other life-changing illnesses where they haven’t recovered enough to be able to return to work, or their employers haven’t been as understanding. At times, I feel guilty reading their stories.

      As I write this I now only see my specialist twice a year and my meds are being reduced every 10 days. I’m back into full-time work in my original role and physically fit again, running at least three times a week, with lots of sport and the gym. I seem to have a “small” gap in my memory of about 12-18 months, but it could have been a lot worse.

      So, it is very possible to make a completely successful and long-lasting recovery from AE and other forms of the disease. I read so many stories of people who have suffered from this terrible illness and are still suffering, so I wanted to write this to let people know there are success stories and you can — with the correct treatment and support network around you — return to full health and look forward to living the rest of your life.

       

      seal - I’m Looking Forward to Living the Rest of My Life after Autoimmune Encephalitis

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

       

       

       

      trivia fb 300x251 - I’m Looking Forward to Living the Rest of My Life after Autoimmune Encephalitis

      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.

       

      Be a part of the solution by supporting IAES with a donation today.

       

      why zebra - I’m Looking Forward to Living the Rest of My Life after Autoimmune Encephalitis

       

       

      My continued story about having Autoimmune Encephalitis

      My continued story about having Autoimmune Encephalitis

      May-13-2020 | Shadazah Brown (known as Daisy)

      Shadazah Brown 2 258x500 - My continued story about having Autoimmune EncephalitisA year ago we introduced you to Shadazah Brown in her piece, A Diagnosis for Daisy. Today she shares an update to her continuing journey. 

      December 31, 2019 at 10 p.m., I had a seizure at home. I woke up the following year, January 1, 2020, in the hospital. I didn’t even get to see the ball drop and celebrate with my family.

      I woke up crying in so much pain, hooked up to the plasmapheresis catheters in my neck. Some of my hair had been cut for the EEG machine. My stomach hurt because of dry heaves. I felt like nothing.

      Since my diagnosis with AE in 2017 — which began with a seizure in a store that caused me to split my forehead open — my seizure medications have been changed regularly to manage my epilepsy. I am also diabetic, meaning the steroid treatments have resulted in additional trips to the hospital to manage high- and low blood sugars. In that same time, the doctors have decided to give me plasmapheresis treatments every three months.

      My depression has kicked in much more and I have lost all communication with my friends and family Shadazah Brown 2 1 243x500 - My continued story about having Autoimmune Encephalitismembers. I think they understand what it’s like to be great living a normal 24-year-old life. Working, driving, had a boyfriend, friends, having fun. Then you go to worrying about yourself 24/7 because you the diagnosis requires it. I didn’t ask for this.

      Being told you’re totally disabled at the age of 24 hurts a lot. I couldn’t celebrate my 25th birthday because I had plasmapheresis surgery since I needed the treatment right away. I still want to be able to work, drive, drink, party, and live a healthy young person’s life.

      I miss having fun so much. I watch so many videos and look at pictures and I cry. People I thought were friends and truly cared, who would be there compassionately, haven’t been. I’ve spent the last two years alone. I have a couple of friends that are still there but remain somewhat distant.

      Now that I have to go to hemoglobin infusion once a week for five hours at a time, I have made new friends who are actually older than me and they are really good people to talk to. (Sometimes, I really miss them and can’t wait until infusion… LOL.)

       

       

      seal - My continued story about having Autoimmune Encephalitis

      Become an Advocate by sharing your story. It may result in someone receiving an accurate diagnosis who is suffering right now and 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.

       

      Trivia card ad 1 FB 500x419 - My continued story about having Autoimmune Encephalitis

       

      Be a part of the solution by supporting IAES with a donation today.

      why zebra - My continued story about having Autoimmune Encephalitis

      Serious Illness Changes Course of Lawyer’s Life, Career, and Practice

      Serious Illness Changes Course of Lawyer’s Life, Career, and Practice

      April 15-2020 | Jackie M. Stebbins

      Jackie M. Stebbins 1 300x234 - Serious Illness Changes Course of Lawyer’s Life, Career, and PracticeLawyers have two great fears in life: 1) missing a deadline and 2) getting sick. Missing a deadline is scary and keeps us awake at night, but getting sick is about the worst. A simple cold or the stomach flu can require us to reschedule a deposition which could possibly change the course of the case and other deadlines, and it feels like all the dominos then start to fall. We’re humans, so we’re going to get sick, but we’re also lawyers, so we can plan for everything. Or wait, can we? I am a lawyer and I fell deathly ill while in private practice. It was unexpected, there was no accordingly tailored action plan, and it was worse than I ever could have imagined. In late May 2018, I was diagnosed with autoimmune encephalitis (AE) and it has forever altered the course of my life. My disease is a sneaky assailant. It took my body and it took my mind before I, or anyone around me, could get a serious hold on what was going on.

      I suffered from insomnia for quite a while before I decided to take it seriously, but only because I was afraid it would start affecting my work. All signs pointed towards depression and anxiety. Lawyers become depressed from their workload and stress, that’s a fact. Who was I to believe I was any different, especially because of the hours I was working and the nature of the cases I was handling as a family law and criminal defense attorney. I didn’t want to admit to any mental health issues, but the slow and serious deterioration of my health finally made me admit and accept it. I was prescribed antidepressants to sleep and continued to plow through work. I told myself I’d take time off in the summer, I just had to make it through my busy spring. By the end of April, I was still an insomniac, my jaws were clenched, my hands were shaking, and my ears rang. In early May, I left work for a week’s break. Earlier that day, I had what I now know was a serious anxiety attack at my desk, and I knew I couldn’t stay at work any longer. I believed I needed time for my medication to kick in, which would hopefully allow me to sleep. On the surface, I told myself I would return to work very soon, but a deep down dark thought told me I’d never return to my office as I nearly collapsed out the door that day. Only six days after I left work, I checked myself into the psychiatric ward. My decline was obvious. I wasn’t very communicative, I stared a lot, I couldn’t sleep during the day or night, I no longer believed I was fit to drive with my children, and my body stopped working while I tried to swim or bike. I suffered from paranoia and confusion and hallucinated with prescribed sleeping medication. During my 48-hours in the ward, my mind started to slip and things, like knowing the date and reading a clock, became a challenge. I struggled to read and write. I cried and exhibited serious tremors. Something told me I didn’t belong in the ward, but I was desperate for help to sleep and to feel better.

      From the time I left work until my time in the ward, my memory isn’t great. Once I left the ward, I nearly ceased to exist as a person and my memory is bare. My life during that time has been pieced together through records and my family’s recollections. For six days after I left the ward, my husband of 10 years took care of me like a child and wondered if I had dementia or was possessed, because of my cognitive impairment and strange behavior. At a follow-up behavioral appointment, my nurse practitioner immediately believed I had a neurological condition and expedited my referral to a local neurologist. Her astute thinking absolutely saved my life. However, the word “neurological” led my husband and family to think the worst. They believed I had a brain tumor. My neurologist’s diagnosis the next day was also life-saving for me. He believed I had AE but ordered more testing to rule out other conditions. Over the course of three days, I failed a neurological examination with flying colors, had an MRI image of my brain that was of poor quality because I shook so badly and could not lie still, and I underwent a spinal tap. I have only a few memories of the testing the first day and I don’t remember much after. My family cried for days and I was oblivious to everything. I repeatedly asked the same questions about what was going on but was fairly easily reassured and was compliant. My mother repeated over and over, “Thank God she doesn’t understand what’s going on.” Just 20 days prior, I had successfully defended an order to show cause hearing, but could not draw the face of a clock during my neurological exam. During the early morning hours, the day after the spinal tap, I had a grand mal seizure in bed that broke and dislocated my right shoulder. I was taken to CHI-St. Alexius Hospital in Bismarck, where I spent the next five days. My memories from the hospital are almost nonexistent and the ones I have are skewed. My health was incredibly fragile and there was serious discussion of having the Mayo Clinic’s airplane fly to Bismarck to retrieve me. While I was sick and rendered incompetent, my husband, family, and a few close lawyer friends took over my life and made all of the decisions for my cases, my role in my own law firm, my health care, and whether my husband had to sell our home and move us closer to our family. I had no idea any of this was going on. They all went into crisis mode to fight for my health and so that no one missed a step at the law firm. The thankfulness I have for my Superman husband, my beloved family, and my friends can never be fully explained. My health started to stabilize, so I stayed in the Bismarck hospital. Upon my release, I began a week of IV steroids to treat the AE. By the second day of treatment, my mind rallied, and my family saw the signs of me again. I underwent a CT scan that same week, which revealed blood clots in my right lung and leg, and three broken vertebrae in my back. It was also during that week that I was able to understand I was never mentally ill, but that all my health problems were the AE at work.

      I went to the Mayo Clinic in June and my diagnosis and treatment were all verified, which was good news; it was the devil we were coming to understand. But the recovery process was slow from there. I struggled with people diverting my attention, noise, anxiety, fear, personal interactions, any public outings, could not drive, felt broken physically and mentally, was limited in movement, and was shaky and unsteady. I was mostly confined to my home for a year. I had to repair my mind, body, and spirit, and the Superwoman efforts required of me to survive and recover were overwhelming. With the love and support of my husband and family, and my determination to recover for the sake of my children, I rose to the challenge.

      I never returned to my law firm after the onset of the AE, and I elected to retire from private practice based upon my health conditions. Starting in fifth grade, I only wanted to be a lawyer and have sacrificed more than I can explain to get to where I was in my career when the AE hit. Feeling like I lost the career I loved and the law firm I was so proud of, felt like the end of me and everything I knew. Although I have lost in unexplainable ways, I have gained an incredible new perspective on life. I have a lot of hope for the future. I also believe I can use the same drive and skills I honed to be a respected lawyer to accomplish the same goal I had as a lawyer: to help others. How I can best do that, only time will tell. I am currently working on a book to describe my experience with AE and I hope it is out for readers to enjoy in 2020.

      As I’ve gone through this journey, I believe I’ve learned a few things along the way and hope to offer a little advice. 1) Take your work-life balance seriously. Upon deep soul searching, I know I was working too hard and not enjoying enough around me. I will live with that guilt and lots of “what-ifs” for life. 2) Make sure you surround yourself with colleagues and friends you admire and trust because your professional life requires it if you are ever unexpectedly debilitated. 3) Purchase long-term disability insurance. It is a great investment and was a life-saver for me. But most importantly, understand and read your policy before disaster strikes.

       

      seal - Serious Illness Changes Course of Lawyer’s Life, Career, and Practice

       

      Become an Advocate by sharing your story. It may result in someone receiving an accurate diagnosis who is suffering right now and 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 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.

      Be a part of the solution by supporting IAES.

      why zebra - Serious Illness Changes Course of Lawyer’s Life, Career, and Practice

      A Look Back at Autoimmune Encephalitis Awareness Month

      A Look Back at Autoimmune Encephalitis Awareness Month

      April-1-2020 | Barbara Layt Vujaklija, RN

      Now that frantic February is finally over its time to look back and take stock of what we achieved. World Encephalitis Day (WED) was started by the Encephalitis Society in October of 2013 and has been held every February 22nd annually since then. The purpose is to raise awareness of encephalitis globally. The International Autoimmune Encephalitis Society (IAES) has participated in WED annually since its formation.  This year IAES designated the month of February to be Autoimmune Encephalitis (AE) Awareness month and will continue to exhibit the face of AE every year.

       

      So, what did we do to bring attention to AE in February 2020?  IAES President, Tabitha Andrews Orth, put together our 4th annual AE awareness video. This wonderful video features members who were kind enough to send photos of themselves in treatment and before and after shots. The AE Warriors Stepping Forward video was a great success so thanks to all who participated.

       

      Our annual Virtual Arts Show 2020 was a beauty to behold. Filled with talent. Drawings and paintings, poems and short stories. It was an outpouring of emotion from the hearts of AE Warriors from all over the world.  If you ever want to know what it feels like to have AE look no further.

       

      We rolled out a selection of AE awareness products that provide the support and encouragement of everyone in the AE community’s desires. AE Warrior Gifts, now available year-round, features the Royal Registry certificates for the AE warrior ™ and Caregiver. These certificates recognize the heroism in battling AE by the patient and caregiver for their heroism under fire.  Survival Kits for AE patients, caregivers, doctors, RNs, Kids, and parents were created, and many members gave these out.  Candy bar wrappers with fun encouraging statements were developed for fundraising efforts and are available for free as well as a unique AE Medical Identification card IAES developed.

       

      With all these great things going on there was still a magnificent topper to the month. Tabitha and her team rolled out a first of their kind Autoimmune Encephalitis Trivia Playing Cards Deck. These remarkable cards were developed with assistance by Dr. Dalmau and have questions and answers about AE to use for quiz games with families, who want to know more about AE, doubles as a rehabilitation tool or can just be used as playing cards.  The original art on the cards was done by a fellow AE warrior, Julia King.  Complimentary decks are being sent out to AE doctors on our Doctor’s List.  The excited responses IAES is receiving from doctors about AE Trivia playing cards are filled with praise and congratulations in developing the ideal tool for AE patients, families and therapists. AE Trivia playing cards are on sale to the public and all proceeds will go to support AE research.  Well done team.

       

      So outreach for the first annual Autoimmune Encephalitis Month was a big success and thanks to all the members, caregivers and volunteers who put in their time and hearts to make it happen.

       

      Of course, the culmination of the month is February 22nd and World Encephalitis Day. Many members sent in updates around this date and pictures to show before and after views that we decided to share some of them in case you missed them the first time around. So here are some great pictures and a few quotes to go with them.

      Renee Sanchez WED April 1 2020 blog - A Look Back at Autoimmune Encephalitis Awareness Month

       

      From Renee Sanchez, “Well today’s the day! Almost exactly 5 months from her first seizure, which would be the last day of work and the beginning of this nightmare for our daughter, she is going back to work!”

      From Paula Lee Ramirez, “Happy world encephalitis day

       

      Paula Lee Ramirez1 - A Look Back at Autoimmune Encephalitis Awareness MonthPaula Lee Ramirez 2 - A Look Back at Autoimmune Encephalitis Awareness Month

       

      From ICU September 2017 to now. Symptoms started in August 12, 2017. I wasn’t admitted and believed I was sick until  September 17,2017. Diagnosed on October 3, 2017 with ANTI-NMDA Receptor encephalitis. I have yet to relapse! ❤️

       

       

       

      Lucy May Dawson - A Look Back at Autoimmune Encephalitis Awareness Month

       

      Lucy May Dawson, “Today is World Encephalitis Day. I, like 78% of people, had no idea what Encephalitis was until the words fell out of my neurologist’s mouth after I was misdiagnosed as having had a mental breakdown and had spent 3 months in a psychiatric ward…….Regardless, I am one of the lucky ones, and I hope that by continuing to post about encephalitis, someone will one day remember one of my posts when their loved one begins to act strangely, and they will ask their doctor to test for it, and it may just save a life”.

       

      Daisy Garuvadoo - A Look Back at Autoimmune Encephalitis Awareness Month

       

      Daisy Garuvadoo: World Encephalitis Day today, from being critically ill with Anti-NMDA Receptor Encephalitis in Nov 2017, 2 years ago, having to relearn to walk, speak, to brush her teeth. to get dressed, to read, to write, to learn basic maths, to tell time and to regaining her cognitive abilities to Medical School and thriving. Yesterday, my daughter was honored for her research project related to Intrathecal procedures at her Medical School. INTRATHECAL RITUXIMAB TREATMENT(though the spine) IS WHAT SAVED HER LIFE.

       

      Kimberly Anne Thompson - A Look Back at Autoimmune Encephalitis Awareness Month

      Kimberly Anne Thompson I beat this. I have no lasting side effects. But awareness is so important… Because Encephalitis often presents with psychiatric symptoms it is often misdiagnosed… I spent six weeks in a Psychiatric Hospital originally diagnosed with having a Nervous Breakdown. I was given meds that only made My condition worse. It wasn’t until I started having Seizures and the Encephalitis began affecting My Heart that I was transferred to ICU and had a Lumbar Puncture which showed I had Anti-NMDA Encephalitis…. It is this delay that kills. I urge all Medical Professionals to consider Encephalitis in Patients that present with Hallucinations for the first time… You could save a life.”

       

      Grace Harimate - A Look Back at Autoimmune Encephalitis Awareness MonthGrace Harimate, It is world Encephalitis Awareness day today yesterday in NZ time…. as I contemplated sharing these images and my story, my heart was pounding … I wanted to forget but this ordeal you’ll never forget…I was misdiagnosed and mistreated with bipolar taking the wrong medications and wrong treatment for 6 years from 13y to 18y. Spending most of my teenage years in the mental health ward. But so glad I met the most amazing people in those years…..The hard part was to come when I woke up from a two-year coma… I was fully blind for one-year memory loss still tube fed etc.
      I was determined to walk … determined to get my eyesight back determined to get back on that horse determined to get a job … I walked into my 21st blind.

       

      These awesome warriors and their brave care givers look at World Encephalitis Day and the new Autoimmune Encephalitis Month as a milestone. Where was I last year and where am I now? Some who have been floundering in a wilderness of lost memories have found their way or at least see a light at the end of their tunnel. Some are still, though making progress, struggling with issues others cannot even begin to imagine. Not only one year at a time but moment to moment. Some have been in comas only to wake up to a new truth, new situation, others are missing months or years of their lives. People they will never see again and new members of family and friends they are only meeting now. Such is the nature of Autoimmune Encephalitis. Your own body turning on you and messing up your brain. Sometimes making you hear, see, taste or smell things that are not there. Trying to make the family and friends in their lives understand the impossible.

      March on brave warriors, continue to fight and savor your special month and the day set aside for you every year. May your lives look better next February.

       

      Your generous Donations allow IAES to continue our important work and save lives! Due to the coronavirus pandemic, the need for our services has surged exponentially. Some cases of COVID-19 have affected the central nervous system and medical researchers are suspecting the infection could cause ADEM, type of Autoimmune Encephalitis. Donations of any size are vitally important to meet the increased need in our community. If you have the ability to set up a reoccurring monthly donation, it will be greatly appreciated and will immediately begin to help patients and families during this historic time.

      seal - A Look Back at Autoimmune Encephalitis Awareness Month

       

      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 - A Look Back at Autoimmune Encephalitis Awareness Month

      Not Stress, Not Lyme, Not Cancer, Not Anti-NMDAr Encephalitis

      Not Stress, Not Lyme, Not Cancer, Not Anti-NMDAr Encephalitis

      March 3, 2020 | By Mitch Gore

      MItch and Jeri Gore Jeri in light blue jacket IMG 5024 scaled - Not Stress, Not Lyme, Not Cancer, Not Anti-NMDAr Encephalitis

      Mitch and Jeri Gore (Jeri is wearing blue).

      Little things, just little things were first noticed by our immediate family. The need to recite over and over the details of how a decision was made, excessive talkativeness, repetitive conversations. Outbursts of anger over inconsequential events, vocalizations of “yep, yep, yep” and a stutter-step when that happened. Something was not right. Periodic feelings of having a “brain spasm” were added to the mix.

      Visits to our personal care physician, referral to a neurologist, MRIs and EEGs all resulted in a conclusion that Jeri was just stressed out. After our son’s wedding, everything would be alright.  It wasn’t. The wedding was a big success but for Jeri, concentrating on the many details was difficult, to say the least. Our college friends noticed immediately that something was not right. “She seems to not be herself, she gets angry easily, what’s up?”

      Could it be a recurrence of the chronic Lyme disease from 8 years ago? Off to the holistic physician that successfully treated Lyme disease. The approach there was to test for exposure to environmental toxins and Lyme. Blood was drawn and then we left for a couple of weeks to go to our cottage in Canada. In those two weeks, our Canadian friends also came to us and asked if something was going on. The repetitive conversations continued along with withdrawal from group conversation. A couple of times Jeri blanked out for a few seconds and became worried-looking, really concerning our friends.

      Back from the cottage the follow up with the Lyme doctor revealed that she was slightly positive on the Lyme test. (Lyme diagnostics is difficult and subjective – a discussion for another time.)That is probably what was going on. Back on antibiotics and several nutritional supplements – for 24 hours. Then our journey really began.

      “Mom’s had a seizure, I’m following the ambulance to the hospital.” Our two adult sons living at home had found Jeri having a seizure shortly after going to bed. Another seizure while in the ER. The workup revealed that her sodium levels were dangerously low. Correction of the hyponatremia began along with MRIs and other scans. Five days as an inpatient to correct the sodium levels and all tests came back negative. No infectious causes, no tumors, must just be a case of spontaneous SAIDH (Syndrome of Inappropriate Antidiuretic Hormone Secretion). It happens, that can be corrected with diuretics and salt pills. Take anti-seizure medicine and follow up with a neurologist.

      At this point, the reader needs to know a little about our family. For years Jeri was a researcher in a biochemistry lab and up to a couple of years ago, a practice manager for a busy physician’s office. I’m a Ph.D. biochemist and molecular biologist. One son is a newly trained nurse and one daughter-in-law is a very experienced pediatric intensive care nurse. Jeri’s brother-in-law is an attorney with over 20 years’ experience in large pharma oncology and has a Masters in chemistry.  To say that there were many opinions on what was going on is the understatement of the year. A lot of family knowledge and experience were being tapped, all out of concern, love, and with the best of intentions. Conversations with physician friends and nurses suggested a myriad of causes.  None of us got even close to the cause.

      The ‘spells’, absent episodes, memory issues, and cognitive decline all continue and increase in frequency. We were home for a week and then another big seizure puts her back in the ER and again admitted to the hospital. Again, all scans and EEG are normal. The doctors in the regional hospital are again scratching their heads. Despite repeated requests, the hospital physicians and our personal neurologist resisted performing a lumbar puncture. Why? We were told there was simply no indication that would justify such a high-risk procedure. Must be the SIADH. Go back to your local neurologist and nephrologist.

      A 72 hour EEG was ordered. This was stopped after 24 hours since we noted so many (~30) ‘spells’ and no further recording was needed. Like two spot EEGs before, nothing showed up. The local neurologist was stumped, calling it a real mystery. We again ask for an LP and testing but were refused on the basis that he didn’t know what to test for. As a shot in the dark, testing was ordered for serum anti-NMDA receptor. Negative results. Sodium levels stay a bit low, but near normal.  Frustration all around.

      Escalating the case was now a family priority but we were stymied by the long wait (2 months!) to get into the UPenn neurology group. A week after the last neurology visit another seizure. A couple of days later we hear a crash and see Jeri at the bottom of the stairs having a seizure, this time with a gash to the head. Back to the ER after a very irrational and angry outburst. Another seizure in the ER and another admittance to the local hospital. The next morning during rounds the floor neurologist is in the room and the hospitalist (physician in charge of cases on that floor) pops in to see how things are going. She asks the neurologist if she is going to order an LP and the neurologist says no, there is no need. The matter is dropped. No words can describe our frustration and helplessness at this point. My son and I discussed the situation and decided to go to the hospitalist and ask for her intervention in getting the case moved to UPenn. She agreed but was doubtful that she could get her transferred. To her and our surprise, UPenn neurology agreed right away!

      We were just so lucky to have the case taken over by UPenn and a group of physicians that have been integral to the discovery and treatment of autoimmune encephalopathies. Within a week we had a diagnosis of anti-LGI-1 autoimmune disease and a week after that we began immunosuppression therapy via a five-day course of steroid infusions and an infusion of Rituximab.

      We’ve been home a week, continuing anti-seizure medicine, oral steroids, salt supplementation, and diuretics. No seizures so far! We are seeing small improvements in cognitive ability and memory. We have a long way to go but are hopeful. The second infusion of Rituximab will happen in about a week.

      Lessons learned:

      Unfortunately, I think we can consider that knowledge of auto-immune encephalopathies is pretty much non-existent to the average physician and even most neurologists. The resistance to exploit all avenues of testing after repeated presentations to the ER and negative results of conventional diagnostics needs to change. That change will only come with physician education. Also, symptoms can be very, very subtle at first and not consistent from person to person. Like a lot of other neurological conditions, the symptoms are common to many different causes.

      Now that the mystery is solved the recovery can begin.  Another Zebra identified.

      Mitch Gore, Husband of Jeri.

      Your generous Donations allow IAES to continue our important work and save lives!
      Learn how you can raise awareness of Autoimmune encephalitis by getting your story published in your local newspaper. 

      seal - Not Stress, Not Lyme, Not Cancer, Not Anti-NMDAr Encephalitis

      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 zebra - Not Stress, Not Lyme, Not Cancer, Not Anti-NMDAr Encephalitis

      Living in the Moment

      Living in the Moment

      February-12-2020| by: Kerry Jones
      Kerry Jones WED2020 2 - Living in the Moment
      I am one of the lucky ones. But, in a way, I think I inadvertently helped make my own luck by contacting the Mayo Clinic when I did.
      A little over two and a half years ago, my wife and I flew from our home outside of Kansas City, MO to the San Francisco Bay Area to visit family. When we returned and got off the plane in late May, my memory was almost completely gone except for a few instances from my childhood which, since I was 68 at the time, was a long, long time ago.

      I started having seizures. At first, just a couple of times a day, gradually increasing to 20 or more a day. I had frequent feelings of nausea and incredible weakness (I couldn’t walk even an 8th of a block without being completely exhausted.) I contacted my physician and he tried to schedule me with the neurology department. They subsequently referred me to another neurological testing group, but scheduling with them was delayed while they were awaiting insurance approval. In retrospect, this may have been another stroke of luck, because, with my symptoms getting worse, I finally contacted the Mayo Clinic in Rochester on a Thursday or Friday in July. Apparently I used the right buzz words because they responded right away and said, “Can you come in on Monday?” Even though they were an out of network provider on my insurance plan, my wife and I jumped in the car and drove up there.

      After being run through a battery of tests and being seen by several doctors, I was diagnosed with LGI1 Autoimmune Encephalitis, and placed under the care of Dr. Eoan Flanagan who began treating me with high dosage prednisone – this was about the first of August. I had my last known seizure in late October, though most of the other symptoms have persisted. At this point, I’m certainly not cured, but am adjusting to a new reality.

      My memory is still very spotty. For example, as I am writing this, we are once again in California visiting family. While talking to my daughter, who just recently moved back here from Kansas City, I mentioned that I hadn’t been back to California since this had happened and that I was leery about flying even though I knew intellectually that flying had nothing to do with causing the disease.
      Kerry Jones WED2020 1 500x375 - Living in the Moment
      My wife gently reminded me that yes, we had flown out here just last year. I have no memory of that. I lived in this area a large portion of my life, but as we drive around, it’s like I’m in a foreign country. I don’t recognize much of anything I see. The funny thing about my memory loss, though, is that I remember people, just not places or events. I’m currently in the process of being weaned off the prednisone and replacing it with Rituxan (I had my first Rituxan treatment last August.)

      I have no idea what the future will hold, whether I’ll get my memory back or not. But I’ve determined to not let that impede my enjoyment of life while it happens. It’s hard sometimes when I’m with friends or family when the conversation turns to reminiscing about a past which I can’t remember, but I know there’s nothing I can do about that. My new motto is “Live in the Moment.”

      Your generous Donations allow IAES to continue our important work and save lives!
      Learn more about how you can raise awareness of Autoimmune encephalitis

      seal - Living in the Moment

      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 - Living in the Moment

      When You Need Help with Your Memory Loss

      When You Need Help with Your Memory Loss

      January -8-2020 | Mari Wagner Davis, RN

      I have been a nurse since 1985. I was working as a nurse case manager when I was at work in December 2017. A co-worker, who I have worked with for years, noticed I was acting strange- laughing inappropriately, busy but not really doing work.  We shared an office and she took my keys out of my purse because I had talked about going home and that idea scared her.

      Memory Loss Mari Warger Davis January 2020 500x419 - When You Need Help with Your Memory LossWhat neither of us knew at the time was that she saved my life. Because I couldn’t find my keys, I went back to the unit I worked on, shortly after that I had a seizure. I was hospitalized and after a few days of testing, I was diagnosed with anti-NMDAR encephalitis. Anti-NMDAR stands for anti-N- methyl-D- asparate receptor encephalitis. It is an autoimmune disease where the body creates antibodies against the NMDA receptors in the brain. The antibodies disrupt normal brain signaling and can cause seizures, memory problems, cognitive issues, speech disorders, neuropsychiatric symptoms as well as other symptoms.

      I was treated with steroids, IVIG and plasmapheresis. I had inpatient and day therapy rehabilitation. I also did a computer cognitive therapy program. Recovery can be slow. Many patients with autoimmune encephalitis are left with memory problems, cognitive deficits and have problems in situations that are cognitively demanding. Memory continues to be an issue since my diagnosis with AE.

       

      I have a calendar and use my phone to keep track of my schedule but what I have found is that people treat me as I was before, that would be great if I had my normal memory, but I don’t. That is part of the problem with having an invisible disability. If you didn’t know what happened to me, I look and can for the most part act “normal”- whatever that is. But in truth, I have trouble remembering previous conversations.

      What was easy for me in the past takes far more of my energy than it used to. I find it is difficult to follow a conversation in a group. There is too much information for me to take in at one time. Sometimes in a conversation with several people, it exhausts me, I lose my place, and end up not trying to carry on and be a part of the conversation- it’s just too much for my brain to process. I just give up. I may experience “flooding” where my brain cannot take in so much information at one time.  People in the conversation may notice I get quiet.  They may think that I disagree with them or don’t like the topic.  In truth, I may have lost track of the conversation and have no idea what the topic is.

      Things that were easy for me in the past are difficult for me now. For example, recently my sister sent me a text asking me to bring two side dishes to a party to celebrate my Dad’s birthday, I don’t remember having a conversation about it at all. I looked back at my texts and found a message from her. In the past, this would be something I would remember and follow up on. Now, I have no memory of the subject at all.

      Helpful tips memory loss blog 1 8 2020 500x419 - When You Need Help with Your Memory Loss

      There are ways for others to help those of us with Autoimmune Encephalitis become more comfortable in these situations. So, for family members and friends of those with AE these tips may be helpful.

      1. When you start a conversation about plans previously made, talk about the previous discussion that was held.  Help by cueing the person. For example, you may say “I messaged you before about dinner on Friday the 12th and wanted to make sure you were still available.”  That reassures me that I did have a conversation about it in the past and reminds me of the topic and date.  It also allows me a chance to confirm it.

      2.  If you are asking me to do something, refer back to what had previously happened and provide contact information if you have it, for example, “Last year for the block party you scheduled the Police department to come and register bikes, can you do that again this year? if you can, I will send you the contact information, Let me know by Monday the 8th”

      3. If we have made plans, contact me several days or up to a week before to confirm, for example, “I have on my calendar that we were going to the movies on Friday the 10th at 7 pm, will that still work for you?”

      4. If we are going someplace where there will be people I may have only met once before, take the time to reintroduce me to them. My husband will usually tell me, “you met them before at the game, but this is John and Mary”

      5. When my husband leaves for work and I am still asleep, he leaves a note telling me that he left for work. He knows that if I am not aware, I won’t be sure of the day of the week and may look around the house for him and be anxious about where he is.

      Letting family and loved ones know that incorporating these types of supports helps us remain social and successful is truly appreciated.  It can keep us from becoming overwhelmed or “shutting down” and allows us to participate fully with more confidence. Trying to stay socially involved is important. Taking a little extra time to do these things will help us to recall previous discussions and allow us to feel more comfortable.

      As time goes on, and friends and family learn the types of difficulties their loved one is experiencing, it will be easier to anticipate situations that they may have trouble managing.   Coming up with solutions by troubleshooting these situations is the best support you can provide.

       

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

      seal - When You Need Help with Your Memory Loss

       

      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

       

      Submit Your Story

      Through my eyes: Watching my Dad’s AE journey

      Through my eyes: Watching my Dad’s AE journey

      November-13-2019 | Ryan J Dinero

      Ryan J Dinero father died of AE 1 e1573603671514 375x500 - Through my eyes: Watching my Dad’s AE journeyIt’s been a little over two years since I got the phone call from my Mom. I was a sophomore in college and was entirely unprepared for the conversation that was to follow. She explained that my dad had a minor seizure while at work and was being transported via ambulance to the hospital. This news came as a total surprise to me because my dad was in seemingly perfect health – no drinking, no smoking, and he exercised frequently. While I could tell that my mom was obviously shaken, in the moments after that phone call I was able to convince myself that everything was fine, that he would get a prescription and return home the same day unscathed. Like many others who have experienced the grueling battle against autoimmune encephalitis I couldn’t have been more wrong about what was to follow. So began my dad’s battle with the disease.

      Its hard to explain to people who haven’t ever heard of AE that it’s not a simple disease to diagnose. In my dad’s case, it took two separate stints in the hospital to finally get an accurate diagnosis. After the first incident he was admitted into the ICU where he lost control of his body almost entirely for several days until the steroid medications began to reduce the swelling in his brain. The neurologists at our local hospital were perplexed as to what the cause of his symptoms could be. They ran a series of tests that ruled out everything from a stroke, a bacterial infection, as well as a multitude of other conditions that I can’t begin to remember. After two weeks in the hospital his facilities began to come back as the medicine did its job, and we stayed hopeful that it was somehow an isolated incident not to be repeated. He was released and began resting at the house as he recovered. It couldn’t have been more than two weeks later that I was woken up by my mom’s screaming in the early hours of the morning. As I ran the stairs I prepared myself for what I was about to see, filled with adrenaline and terror that even two years later keeps me awake in the night. When I reached the living room, I discovered my Dad on the couch having a full-on seizure, something that I had only previously seen in movies. Knowing little to nothing about what strategies to employ to help, I opted to pick up the phone and dial 911, and just as I heard the phone ringing I heard my Dad’s voice from the other room express that the seizure was over and that he felt fine. I hesitantly told the operator that things were fine, spent a few minutes making sure my Dad was responsive and lucid, and somehow returned to sleep. Less than an hour later I was awoken by the same screams, and this time I knew that another hospital visit was imminent. Thankfully, the doctors explained that a small reduction in the seizure medication was to blame and they sent us home that same day.

      Over the next month my Dad returned to his normal self slowly but surely. His previous hospital stays were characterized by extremely abnormal behavior that the doctors attributed to his brain swelling. Things that he would have normally never said or done became commonplace while he was in the hospital. He forgot names, places, and other details. After the doctors adjusted his medicine he became more lucid. He was able to laugh at jokes and even bust out some of his own signature humor. While things were obviously different, namely his strength and ability to remain energetic throughout the day, things felt normal. They remained that way until Christmas Day, when another minor seizure sent us to the Houston Medical Center. The hospital was almost completely understaffed and made for a less than ideal celebration of Christmas. This visit was the most serious of the many that we experienced, as we called Houston Methodist our second home for over a month while doctors scrambled to properly diagnose my Dad’s symptoms. The team of neurologists there were incredible given the circumstances and after weeks of uncertainty and guessing, they were able to finally conclude that my Dad was suffering from autoimmune encephalitis caused by an antibody that was unknown.

      Ryan J Dinero father died of AE 2 500x333 - Through my eyes: Watching my Dad’s AE journeyFor my family, a diagnosis was everything we had wanted; we could finally begin a treatment plan that was focused, instead of one that had no timeline or endgame in sight. By this time however, my Dad’s health had seriously taken a toll. As a result of losing his ability to walk he was bedridden for most of the month. It was also around this time in the hospital that something seemed to be off with him mentally, he was saying things that weren’t necessarily true and overall had developed a very bad attitude that led to frequent outbursts.

      After another lengthy stint at a physical therapy center, Dad was finally able to return home. My mom worked tirelessly with him every day on his occupational therapy, encouraging him and try and stay positive. Things were okay again for a few months, but eventually took a dark turn as my Dad began having suicidal thoughts and began exhibiting symptoms of psychosis, leading him to believe things about the world that weren’t true. He was constantly worried about money and convinced himself that the police were looking for him and had a warrant for his arrest. He left the physical therapy facility in February and in April he attempted to take his life for the first time. Thankfully he was unsuccessful, but he did serious damage to his arm as a result and had to be admitted to a psychiatric hospital for a few weeks and had to undergo more physical therapy for his arm.

      It was during his stint in the psychiatric hospital that I first reached out to the folks at the International Autoimmune Encephalitis Society where I received tons of resources about how to get Dad released from the psychiatric unit. Once he was released, it became apparent that IVIG treatments were the right treatment, but we were denied a total of 3 times by our insurance provider on the grounds that the treatment was not FDA approved and did not actually treat AE. Thanks to the hours of phone conversation with members of the IAES, I was able to eventually overturn the decision and Dad began receiving IVIG treatments shortly after. When we returned home, I could tell that he was tired of living, that his spirit was drained, and he was ready to give up.

      Despite utilizing every available resource at our disposal, he succeeded in taking his life in late September of 2018, just three days before his 51st birthday.

      It’s hard to describe my thoughts and feelings throughout the past two years because the only way I can think of it is as a never-ending roller coaster, constantly up and down with no end in sight, until there finally was one.

      Ryan J Dinero Father Johnny 9 20 2018 500x375 - Through my eyes: Watching my Dad’s AE journeyI would be failing to honor my Dad’s legacy if I failed to mention that he was an incredible man, the best man I think I’ll ever have the pleasure of knowing. That said, for me, the experience was agonizing and easily the worst thing I’ve ever had to endure. It felt like some days would never end, and it was exhausting trying to rationalize with someone’s who’s brain would not let them experience reality the way it ought to. The countless hours spent sleeping on uncomfortable hospital furniture, the excruciating hours spent at physical therapy being a cheerleader, and the anxiety of waiting for the doctor to step in the room are just a few poignant memories that come to mind when I think about that period of my life. Some of the happier memories involve performing daily miracles: like making my Dad laugh at a dumb joke or getting him excited enough about The Beatles to get him to sing along in the car.

       

      This whole experience has shaped me and impacted me in ways that I cannot begin to describe. While my Dad’s battle with AE ended almost a year ago on September 20th, I continue to wage my own battle every day dealing with the repercussions of this deadly disease. It’s still hard to get out of bed some days because everything is a reminder that I’m here and he isn’t. I can’t help but think about what I could have done different, how I could have made his life a little better than I tried. I think these feelings are natural now that he’s gone. As much as I try to not let myself dwell on them they are always in the back of my mind. The whole-time Dad was sick I was in school three hours away, so many weekends were spent back home at the side of a hospital bed while I struggled through my sophomore and junior years of college. I somehow managed to stay in school and keep my grades up, and I’m looking forward to graduating this coming year.

      For the first time in a very long time I can confidently say that I am genuinely happy and hope that by writing a little bit of my story that someone out there, whether it be a caretaker, a friend, a family member, or even someone who hasn’t heard of AE would be encouraged and inspired.

      To all the caretakers out there – keep going and don’t let up. Use the resources that IAES has to provide the best care to your loved one. I can confidently say that if it weren’t for this organization my Dad would never have received IVIG treatments, which were instrumental in his recovery.

      If you’re reading this, and can relate in any way, I’d love to hear from you about your experience. Much love to everyone.

      Ryan

      Contact Ryan at ryandinero@icloud.com

       

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

      seal 150x150 - Through my eyes: Watching my Dad’s AE journey

       

      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 zebra - Through my eyes: Watching my Dad’s AE journey

       

      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 »