December 9, 2020 | By Sherree Bargo

Larissa was born after a normal, healthy pregnancy on May 29, 2007. The next 5 years were seemingly “normal” as she hit all of her milestones on time and ahead of most of them. She was potty trained by 2, reading Dr. Seuss books by memory at 19 months! She was classic first child doing everything early. At 19 months after moving into our house where we would live the next 5 years in September 2008, I took her to her scheduled doctors appointment for her checkup and to get the scheduled vaccines. On the way home from the doctor Larissa projectile puked, which she had never done before. She was completely breastfed and had never even spit up. After checking her out she seemed fine and I blamed it on her drinking her bottle too fast in the hot car. The next 6 months she continued to vomit intermittently projectile and then would return to fine and playing every time. At age 2, after trying to cut back on her milk and other diet changes thinking it was something she was eating, I took her to her pediatrician about these vomiting spells. After Conducting some classic GI test he didn’t find anything but presumed it was some type of reflux and sent us on to a Gi specialist. She was 3 by the time we got into the GI specialist. All the while she was still progressing fine, growing, eating , playing ….The GI specialist conducted a few other tests over the next year and started her on ranitidine for a presumed ulcer and Prevacid for the puking to protect her esophagus.

In March of 2012 right before she was turning 5, she did a GI scope and found no ulcer, proceeded to order an MRI to check hormone secretions in her brain from her hormone glands since we noticed she was also breast budding and these vomiting spells seemed to by cyclic. Larissa would have days at this point where it seemed like a vertigo where she would be sick like the flu puking all day every time she would try to move another nauseous spell would hit. She never had a fever. Then like a light switch was flipped off she would wake up and be back to her normal self and only puking once or twice a day.

The MRI was conducted April 2012. The next morning at 6 am I will never forget that call. The G
I specialist called to tell me the findings of the MRI. I thought it was weird he was calling me himself and not a nurse. He told me there was a lesion in Larissa’s brain in the right temporal lobe and that sometimes when children vomit it is actually some type of seizure. Everything froze for me in that moment.  I cried.  I prayed. I couldn’t believe something so serious was going on with my baby.  I kept hoping this puking thing was something with an easy fix and nothing serious, but it was getting worse and I knew in the back of my mind something was not right. 

In May of 2012 Larissa was referred to a neurologist due to the MRI findings and the possibility of her having seizures. The neurologist immediately started her on trileptal just by our description of spells of nausea. 

In July of 2012 an overnight EEG was conducted in the hospital.  It identified that Larissa was having up to 20-30 seizures per hour! The seizures were the cause of her spells of nausea. The next year there were several hospital trips where she would be having these spells all day every day.  Aware that seizures were the cause, we would go back to the hospital. It seemed as if countless seizure medications were tried. She was put on phenobarbital (which she was allergic to), onfi, Keppra and Vimpat.  All had the same effect. They would help a little and then their effectiveness would wear off.  

The next year in March of 2013, after another hospital stay where her seizure frequency reached 30 per hour all day, no sleep barely eating, it was determined Larissa was a candidate for brain surgery. They told me she would have an 80% chance of being seizure free after surgery.  As scary as it was, I agreed. I wanted to do anything to help her get better. 

During this time Larissa was still able to thrive and play and progress. She loved swimming and going down the big slide at the Mooresville pool. She knew how to read and write. She loved the library and singing.  

The surgery was performed on June 28, 2013 and lasted 12 hours.  Afterward, the brain surgeon told us there was much more scar tissue than she had anticipated. She removed almost the entire tail of her amygdala and part of her hippocampus. Larissa recovered well. She was seemingly seizure free for about a month until episodes of nausea slowly crept back. She had started kindergarten in August and was one of the only kids in her class who could count to 100, write her name and read. Despite her intelligence, she had a lot of behavior problems and low attention span. She had an attention span of about a minute and would have a lot of outburst of pinching, biting or screaming or rolling around on the floor.  Because of her challenges, she was in the student support center a lot and was cut down to half day attendance. 

In October I noticed she would fumble with her pencil a lot. She was right handed but was using her left hand instead. I mentioned this to the neurologist thinking it might be some type of brain dominance issue since her surgery. They didn’t know. By December 2013 I figured out why she was dropping her pencil. She had a twitch in her right hand and foot.  Every few seconds they would twitch, which also caused her walking gait to be out of alinement as her right foot was thrown outward. 

After 6 months, and with no new findings of seizure activity on a comparative EEG, and having weaned her onfi, to eliminate the possibility that she had developed a movement disorder caused by the medication, the neurologist thought her movements were “behavioral”. Larissa’s twitching had escalated to such a point that she wasn’t able to walk or eat anymore. Her condition was so severe she had to be pulled around in a wagon at school. By May 2014 they decided it was no longer safe for her to attend school. One year almost to the day of her brain surgery, in July of 2014, she was admitted to the hospital once more.  It was during this hospital admission another EEG was performed that found she was having a constant partial seizure coming from the left side of her brain now.

Before her surgery the previous year, after several tests, I was assured that there was NOTHING on her left side and no seizures coming from there. This was why they had such high confidence the surgery would be successful.  They were WRONG. She was now having the same type of seizures, and much worse coming from the left side of her brain. Whatever the cause, it had progressed.  One of her neurologists thought her condition was caused by brain inflammation of some sort and mentioned autoimmune epilepsy. He started her on Solumedrol and IVIG in late 2014.

She experienced great improvement after her first IVIG treatment. She went from spending a great deal of time in a stroller to coming home and playing and jumping on the trampoline. It seemed the IVIG was a magic cure. but it was short lived.  Larissa’s seizures came back the next day.  Larissa continued IVIG with solumedrol pulses for the next 6 months. She had hit a plateau.  She wasn’t declining. She was walking but was still having daily seizures. At this point her treating neurologist felt he needed to be seen by a specialist as she felt Larissa’s case was beyond her expertise.

The new neurologist immediate stopped the IVIG feeling it wasn’t warranted. She questioned the treatment with a laugh in her voice indicating she felt it was not medically necessary.  June 2015 was her last IVIG treatment.  After stopping IVIG, a VNS was placed in August of 2015. In October of 2015 a swallow study was conducted and confirmed she was aspirating when she drank or ate. A g-tube was then placed.  The g-tube was so hard on my little girl. She loved to eat. As a parent, I was beyond frustrated in trying to get my child healthy.  

By 2017 her health declined, and her education suffered because of it.  She was now behind her classmates. While she was able to retain learned skills from kindergarten she was not able learn anything new. In hindsight I wonder if the IVIG had been continued, would she have had this downhill slide? It was such a slippery slow slope.  I didn’t connect the two until I was able to look back over time.  She was having 20-40 seizures a day.  Her doctor would adjust her seizure medication or try another medication trying to find the right combination that could arrest them.  One of her neurologist’s considered “presumed Rasmussen encephalitis” as a differential diagnosis in her chart noting she “didn’t know what else it could be”.  She explained to me that the treatment for Rasmussens was removal of the half of the brain affected and Larissa had already had surgery on the other side, so she was just stuck basically. We were told there was no treatment. It is what it is. All we could do was try to manage her seizures with seizure medications.

All the while I kept asking her what else it could be because the hallmark with Rasmussen’s encephalitis is atrophy on the side of brain affected, and this had been going on for years and she had no atrophy.  She would again tell me there was nothing else it could be! 

Finally, in November of 2017 I requested a referral for Larissa to be seen by a neurologist, Dr. Grenier at Cincinnati Children’s Hospital, who specialized in treating Rasmussen’s patients.  In March we received confirmation that it was not Rasmussen’s. Dr. Grenier explained that her MRI finding showed she should still be walking. He noted brain inflammation on both sides of her brain on the MRI done prior to her surgery in 2012 and felt that the surgery had been unwarranted. While it didn’t hurt her or cause anything to worsen, he felt based on her MRI that the surgery would not have been beneficial. He was determined to arrive at an accurate diagnosis. He ruled out mitochondira disorders and genetic disorders and ordered antibody testing that were sent off to the Mayo Clinic.

On May 8th, 2018, ten years after our journey began, we found out what was wrong with our daughter. It was treatable. She had Anna-1 autoimmune encephalitis. Larissa was admitted into the hospital for what would be a 6 week stay. Anna-1 has a cancer association. All testing for cancer was negative. They started her on 10 rounds of plasmapheresis. Her MRI showed that there was no brain cell death. So, if we can get the inflammation down, she would regain full movement in her right and walk again.  We noticed some improvements with the plex (plasmapharesis), her next treatment was Cytoxan, a chemotherapy treatment that can impact the inside of the brain cell where they Anna-1 antibody had taken up residence.  She received her first round of 6 Cytoxan treatments in the hospital before finally coming home. After each treatment we noticed positive improvement. Her seizures were less frequent, and she was more alert.   

Each Cytoxan infusion required an overnight hospital stay.

Our journey had taken us to many different types of doctors. Now we were with doctors who specialized in autoimmune neurology. To date, when I asked what could cause her AE, I was met with an unclear answer. Infections and tumors where the only thing known to cause antibody mediated AE per the research up until that point. The doctor who was treating Larissa at the time was relocating and referred us to Dr. Michael Sweeney in Louisville, who happens to be on the Medical Advisory Board of IAES.

At our first appointment, Dr. Sweeney said he had been studying Larissa’s chart trying to figure out what could have triggered her disease process.  He felt it was a vaccine reaction. He went on to tell me about a whole vaccine court set up for people like Larissa and that it is fairly easy to file and that I should file a claim for Larissa. I tried and there is a 3 year time limit from the time the vaccine is given, even if it takes years to get the correct diagnosis. He also started seeing my younger daughter Layla who has autism and determined her “autism” was caused by her vaccines that can cause encephalomyelitis followed by onset of regression. ADEM is a type of AE that has a known trigger of vaccination.  He has given both of my daughters medical vaccine exemptions. Due to a family vulnerability, and this is specific to my children, so please don’t jump to any conclusions, both Dr. Sweeney and our pediatrician agree that in their circumstances vaccines should be avoided.

After Cytoxan, Larissa underwent tocilizumab infusions. We continued noticing improvement. After 6 months of treatment Larissa was moved to  an actemra pen.  An injection I can do for her at home every 2 weeks. In November 2019 IVIG added because she seemed to have plateaued with tocilizumab.

Larissa has continued to improve. When her school saw her on a zoom conference call last March they were ecstatic at how alert and physically strong she was. She still has a ways to go. She is not yet walking or able to color with either hand.  We can have IVIG home infusions monthly, with a home infusion nurse attending. 

It has been a long journey.  I had a dream recently.  I was on the phone telling Dr. Sweeney that I was concerned because Larissa wasn’t walking yet. Upon hearing my end of the conversation, Larissa got up off the coach and began walking around the house smiling proudly. “Look at me!” She called out with joy! I take my dream as a divine motivation to never give up hope. What seems to be the impossible will be possible.

My daughter Larissa has Anna-1 antibody positive autoimmune encephalitis and is now 13 years old.

Your generous Donations allow 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 this 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.