August-7-2019 | Sheila Sims
My daughter and I attended the July 27th ‘Day of Strength’ event at Texas Children’s Hospital. I wanted to share our experience as I hope others will get the opportunity to attend events like this one in the future as well. We were informed about this convention by my daughter’s Neuroimmunologist (Dr. Rohini) as we had been in her office for my daughter’s first visit with her. She informed us that there would be information from experts attending and speaking on Autoimmune Encephalitis. I was intrigued so I immediately went online and booked our tickets.
A little back story about our personal experience with Anti-Nmda Receptor Encephalitis. It all began on February 7, 2019. My daughter had been feeling “not herself” for a couple of weeks. She informed me she could not think straight, she was confused, eye sight was not right (seeing double) and she was exhausted. I made her an appointment with her primary and she was diagnosed with a UTI.
I figured OK, maybe this is a bad one and after a round of antibiotics, she will feel much better. That was not the case. After a couple of trips to the ER after her appointment, things just started to get worse. I made her a second appointment with her primary, as I knew something was not right. The day of her second appointment is when we would witness the scariest times of our lives. As she was getting ready for her appointment, she started making no sense with her words and had no clue about what we were doing. She didn’t even know where she was. Then out of nowhere, she collapsed and started seizing.
This was all so completely out of the ordinary for her as she had been healthy her entire life. She was rushed to the hospital by ambulance as she seized again en-route by ambulance to the hospital. When we arrived, they immediately took her for scans and performed a lumbar puncture. They knew after the lumbar puncture, that she was in fact ill, just had no diagnosis just yet. It would be three weeks in the hospital before the diagnosis of Anti-NMDA autoimmune encephalitis was confirmed. She experienced psychosis, hallucinations, clonus, tonic clonic seizures, periods of comatose, and several other symptoms.
After two months hospitalization, needless to say, this is when I decided I will not stop until we have answers. I would not stop looking for information that could be beneficial to my daughter and I knew there were people out there going through this as well. Thankfully, my sister (Dianna Sims) was helping try to find information when she stumbled upon International Autoimmune Encephalitis Society. I will just say, it was God sent! OK, OK, enough about us and back to the day of strength.
We went to this convention, it was our first time attending something like this. My main goal when going was to get better informed by experts and individuals that have walked this walk. We got there a tad early and I do not regret it. When we got there, we sat at a table alone feeling a little awkward and maybe a little out of place. Things soon lightened up as we started to meet more people. The first two people we met where a mother and her 18-year-old daughter from New York. They were just plain out beautiful people. The daughter, we discovered was also fighting anti-NMDAr AE. My daughter instantly felt that she was not alone in this fight and that there were, in fact, people that could relate to her. That was a hug to my heart. The people we met and all those who attended, caregivers, parents and patients were all struggling in the same way. All of us were fighting for the same cause, walking the same journey and we felt for the first time that we not alone. This was the first time I experienced that we do not have to fight alone. Being in the company of others who we could talk with who related and understood our situation because it was a shared experience.
When the convention started, Dr. Muscal spoke first. He spoke about the history of encephalitis and all the new findings, treatments that are available and the hope of a cure one day. He was intriguing and brilliant. He had information that I was glad to receive as I had not seen some of it before. The next presenter was Nesrin Shaheen. She spoke of her daughters’ journey and how they fought for many years before a correct diagnosis was made. She also spoke of some ancient history around encephalitis and had some awesome slides of possible encephalitis in that ERA. If a mother ever wins “Mother of the Year Award”, she would be that mother! She fought, she involved herself and, in the end, her daughter is succeeding well! She is my new role model (next to God, of course! Lol)
Next, Dr. Saxena (Psychiatrist) spoke. She discussed the psychiatric symptoms of Encephalitis. She went over a list of medications to help as well. Not many Psychiatrists are well informed about symptoms and correct psychiatric supportive medications for autoimmune encephalitis but she was! She made perfect sense. The last session we were able to stay for was the “self-care” session. In this session, patients as well as care givers were given a breathing exercise to practice. They also went over a check list that was provided to everyone in the room of different activities that they may be willing to do as to take a minute or two of the day to self-care. Though the patient is the focus, caregivers must also maintain a level of self-care. I think that this was very important as many of us have lost ourselves as caregivers and have forgotten ourselves and what some of our basic needs may be. This was a real eye opener.
I have to say, I was a little skeptical and nervous going into this whole convention thing but, it really opened my eyes to all the treatments, the people going through the same thing and the possibilities that patients actually have! This is something I absolutely do not regret and look forward to attending many more as we are able.
Anti-GABAb Autoimmune Encephalitis. I’m recovering from that.
I pray your recovery is going well!