The following is an excerpt from Maddi Beats AE, a read-worthy blog by Tricia Rispoli.
“I wasn’t sure what time it was, but I knew it was really early. I hadn’t slept yet. I was too afraid to roll over and check the time and wake Maddi, but I knew it had been hours. This was the first time she had slept more than an hour at a time, and I was afraid of disturbing her. I was terrified to sleep. I laid there and watched her breathing. Counting the seconds between breaths. Watching for any sign of a seizure. I needed something to bring to Dr. Ryan in the morning. I needed to convince her that something was really wrong with Maddi, and that I was scared to take her home. I continued to study her while she slept beneath me. 1…2…3…4…5…6…7…8…why isn’t she breathing??…9….10….11….12….13…Oh my god, she’s not breathing, should I shake her?….14….15…Maddi’s whole face twitched, her eyes flew open, she gasped for air, and sat straight up. At that point, I was scared. I shook her shoulder, “Are you okay?” She looked at me, then laid back down and closed her eyes.” Maddilyn was diagnosed with Autoimmune Encephalitis – NMDA Receptor Type on May 16th, 2016. To read more please visit Maddi beats AE
Tricia (the author) is “mama” to Maddilyn, or Maddi as she prefers, who is 5 years old. She a licensed Mental Health Counselor in the state of Florida, with a specialization in mental health for infants, elementary school aged children, parenting, ADHD, and other disruptive behavior disorders. She is also mama to Jaxon, and step-mom to Alex and Ashlee. Married to Jason since 2010. Tricia’s hope is that somewhere out there, someone will read about her daughter’s journey, and through it, find a diagnosis. She especially hopes to reach out to parents who are struggling with the emotions, pain, trauma, and stress of caring for a child with Autoimmune Encephalitis.
Update as of June 2, 2016
Tricia writes, “We met with the Neurologist, Dr. Kang, and filled him in on Maddi’s progress over the last couple of weeks. He agreed, that she would need additional treatments. The Risperdal, although helpful, was only treating the symptoms of the AE. Eventually Maddi would reach a point where she was tolerant, and the only option would be to increase the Risperdal; which she would eventually become tolerant of as well. Dr. Kang believed Maddi was already becoming tolerant of the dosage she was on, and increasing it would only cause her to become more sleepy. Alternately, we could try heavier anti-psychotics…but she’s five. So, that’s not really an option for me. Dr. Kang agreed that a second round of IVIG would be the best course of action for Maddi right now. We’d admit her to the hospital, so we could also begin her steroid taper. We left with a game plan to re-admit her to the hospital in the next few days to begin a second round, but Dr. Kang called to tell me that after conferring with his colleagues and an Immunologist, that they felt the best course of action would be to start Rituximab; a drug used in the treatment of cancer. It is an immunosuppressant, that will destroy her overactive immune system, and prevent it from attacking her brain.The idea of putting her on drugs used for Cancer treatment, is very scary and very unnerving, especially when the side effects are potentially fatal. I’m still processing how I feel about this. So far, I’m thankful our treatment team is willing to be aggressive. That makes me feel hopeful that Maddi will make a full recovery. I’m thankful we have options and access to resources.”
We, at the Autoimmune Encephalitis, are thankful to Tricia, Jason, Maddilyn, Jaxon, Alex, and Ashlee for allowing us to share their story. Let us all remember that awareness is the first step in comforting those with AE.