Lakin is 13 years old recently diagnosed with Idiopathic Seronegative Autoimmune Encephalitis.
On January 9, 2022 Lakin was diagnosed with Strep Throat and Influenza A viruses. He spent the next few days in bed with very high fever and sleeping most of the day. On the evening of January 13th his fever finally broke and he woke up Friday morning with concerning " neuro-psychiatric changes". I spent the weekend trying to figure out whether it was dehydration, calling nurse on call and googling his deteriorating symptoms. On Monday January 17th I took him to our pediatrician. She was stumped by his symptoms and decided to do a full blood work up. She instructed us to take him to the ER if he worsens. Later that day labs were coming back and everything was completely normal other than these "symptoms". By Tuesday morning my (mom gut) kicked in and I was certain something bigger was wrong with our boy. I took him to the Emergency Room in Waterloo. The ER Doctor ordered several tests and scans of which were coming back normal but it was clear to her that there was something being missed. They decided to do a lumbar puncture, his CSF showed some protein and inflammation. After consulting with the hospital PEDS floor they determined that he needed to be transferred to St Mary's Hospital - Mayo Clinic. A two-hour bumpy ambo ride and a whirl of emotions we finally arrived and were directly admitted to the PEDS floor. The next morning Lakin was sedated and had two types of MRI, scans, more labs, another lumbar puncture.... The next days were blurry with several episodes of in and out of "baseline". He would say and do bizarre things, make strange noises, stare off into space, flat affect (no emotion) it was like I could see straight through him. Tests were still coming back normal so they decided to put leads on his head and do a 48 hour that turned into 72-hour EEG to rule out seizure activity and see what he brain waves looked like. During this time I had to push a button each time he was not at baseline and if/when he was doing and saying things out of the ordinary. We met with PEDS Yellow Team, Neurology, psychiatry and rheumatology daily while we were there. They ruled out quickly that it was not a primary psychiatric episode and that it was indeed a medical episode. They started Lakin on very strong IV steroids in which made his symptoms spiral WORSE. After two days they stopped those and decided to start IVIG treatment (we call this magic medicine). They gave Lakin medication to make him sleep through the 4 hour infusion and he woke up 6 ½ hours later at BASELINE. Praise God --- for answered prayers. We hugged and celebrated as he remained at baseline. Lakin was “charming” all of the docs and nurses, talking about football and what he wanted to be when he grew up. Staff was amazed at the difference after one treatment of IVIG (magic medicine)! He had three more days of infusions following the first. We played bingo, watched movies, walked around, talked about the “dream” that he was in and out of and just really enjoyed our time until we were finally discharged on January 25th. Doctors were hopeful that it was a one-time occurrence due to mycoplasma (pneumonia) virus that they found in his blood during labs. Lakin stayed home from school a couple more days and remained at baseline. Went back to school, played basketball, hung out with friends and family etc.
Lakin was doing phenomenal with no concerns so Nick and I decided to re-book our family “Christmas” trip that we had to cancel when he was hospitalized for February.
February 12, 2022 – Punta Cana! We enjoyed the beach, pools, family time, shows and SUN for the first two days! On February 15th Lakin did not want to wake up in the morning, he was irritable and we brushed it off to not sleeping well. We finally got him up and going. Went to breakfast and to the pool. After a short time Lakin requested to go back to the room and lay down. This was definitely a red flag looking back. Those that know Lakin… know that he isn’t going to “nap” or be indoors while in paradise. Nick took him back and he laid down for a couple hours and when he woke our nightmare began. Here we are in another country and his symptoms were BACK. He was in and out of baseline the remainder of the day. That evening around dinner he went into an episode (altered mental status) and wasn’t coming out of it. The next morning I spent several hours at the front desk coordinating an early flight home, covid tests etc. We were able to get a return flight home on Thursday. I feared that due to his status we would get stuck in security and they would not allow him to board or worse… we would end up in a hospital there. That they wouldn’t understand what I was explaining to them, that my child was having a medical episode. I had never been so afraid. I was able to reach one of his Mayo doctors on the phone using an international Mayo clinic number. Dr. Hall was able to help us medicate him and keep him safe and asleep on the plane until we got home. He instructed us to go to the nearest hospital in Minneapolis if symptoms got worse or drive him directly to St. Marys. We got to St. Marys Thursday evening and the relief… WOW cannot even explain. At this point we hadn’t seen ANY baseline in Lakin since Tuesday evening. We were admitted and some familiar faces started showing up. Many of the same doctors and nurses that helped us in January were there. They assured me they were going to figure this out and get our boy feeling better soon. His symptoms were MUCH worse this time around. He was agitated, angry, saying things he would never ever say, emotional etc. Instead of being in and out of baseline like in the January episode he was 100% “out” for days. They sedated him on Friday and ran many of the same tests. Yet again, tests were normal. Talk about frustrating! They decided after a couple of days to start him back on IVIG. He had three IVIG infusions and finally responded with glimpses of his baseline after his 2nd IVIG infusion on Sunday February 20th and by Monday he was almost 100% back. He didn't remember anything that had happened and the last thing he remembered a little bit was being in the airport in Punta Cana. The teams continued to staff his case and decided to schedule a PETSCAN to rule out the really scary stuff.. Tuesday morning February 22 he had a PETSCAN. A few hours later we were told the PET was clean (praise god) and he was officially diagnosed with Idiopathic Seronegative Autoimmune Encephalitis. February 22, 2022 was also World Encephalitis Day **
Game Plan –
We are home!! I am working hard to educate myself on his diagnosis and will advocate like never before for him #mamabear and for others that have been and those yet to be diagnosed with this debilitating inflammation of the brain.
We met with OT before leaving the hospital and they recommended 2 weeks at home. Lakin is fatigued but feeling better than his brain is actually feeling I think – going to be hard to keep him down so wish us LUCK 😊. He understandably wants to be a normal kid but we have to allow his brain to rest and recover. Lakin’s Pediatric Neurologist specializes in auto immune diseases (praise god -- for a specialized specialist right!?!?) has scheduled outpatient IVIG infusions in Rochester every 3 weeks. We hope that doing the infusions three weeks apart will prevent relapse in symptoms and keep him out of the hospital. We have follow up appointments with Neuro, Rheumatology and OT while we are in Rochester for his first infusion March 15. So…. if you are looking for the Peyton’s during #SpringBreak2022 that is where we will be! Whatever it takes to keep our boy feeling good.
Thank you for all of your prayers, positive messages, blessing him with gifts to brighten his day and LOVE. This diagnosis is not easy, it’s complex and varies person to person on how they respond to treatment and for how long before relapsing. 1st line, 2nd line etc. We pray specifically that the IVIG continues to work long term for Lakin. I will keep this page updated on things I learn, his recovery and any prayer requests.