5 months and counting…

It’s been five months to the day since Maddi was given the official NMDA Receptor Encephalitis diagnosis and treatment was started. Just 6 months ago, our lives were “normal-ish.” No weekly hospital appointments. No medication regimes. No having to wrap our kid in saran wrap for bath time. No anxiety or fear over all the unknowns. Life has changed so incredibly much in just a short period of time.

Maddi is doing very well. I’m always really nervous to say that, or even believe that, but, she is doing very very well. In the last five months, she has endure so many medical treatments, tests, and hospitalizations. She’s had 5 rounds of IVIG, 2 high dose steroid pulses, along with Oral steroids; 3 doses of Rituximab, with scheduled maintenance doses every 12 weeks. She has received roughly 11 rounds of plasmapheresis, and has 4 more scheduled, then we will meet with her treatment team to decide the next course of action. At the same time, she is being weaned off of the Steroids, which have the worst side effects ever (rapid weight gain despite ANY dietary precautions, irritability, growth restrictions). At her last Rituximab infusion in September, Dr. E ran her NMDA Titers and they were within normal parameters. This is very good news! Dr. E explained that this meant no antibodies were currently being made or present in her plasma (thanks plasmapheresis!!) All of her treatments work together to stop the progression of this disease. The Rituximab stops the B cells from making plasma cells…Plasmapheresis removes the mutated antibodies…The IVIG and Steroids work to suppress the plasma cells from creating the anti-NMDA antibody. So as long as there are no plasma cells producing anti-NMDA antibodies, then the disease progression should stop, right? It sounds like the perfect storm, BUT, and there is a very big BUT…there are NO tests and NO way of knowing if Maddi still has plasma cells within her body. Plasma cells can be in her blood marrow, her liver, kidneys, and other organs. The IVIG and Steroids are suppressing those plasma cells from making antibodies, so once she is done with the Steroids, there is a chance those plasma cells could start to be a problem. We’d know that there are plasma cells in her body only if her Titers rise after discontinuing steroids. Its an “inadvertent”confirmation. Dr. E stated that at that point, we would need to explore other chemotherapy drugs that target the plasma cells directly, killing them off. Then she rambled something about “cancer,” and “future risk,” and frankly, I was so overwhelmed at that point, I didn’t hear her. I’m just praying we don’t get to that point. I’ve made enough “hard” decisions that impact Maddi in the last 5 months than I care to do in a lifetime.

That being said, I can honestly say that plasmapheresis has been the turn around for her. Even though the multiple surgeries and scares we had with her heart HAD to happen, I’m thankful we chose this course of action. After the first course, Maddi’s personality started to return in full force; and by the 7th and 8th treatment, she started to become annoying again (haha), so we KNEW it was working!!!! She’s back to running, jumping, dancing, skipping, cartwheels, and imaginative play. She’s back to sassy comebacks and thinking everything is up for debate. She’s back to joke telling, and just being silly. She’s back to snuggling, smooching, and asking to be tucked in. She is learning to read, and he cognitive functions seem unimpaired..and with that, she’s back to excessive fidgeting and daydreaming! It seems, that for the most part, Maddi is back to her “normal.”

We celebrated her 6th birthday a couple of weeks ago, and it was so very bittersweet. Every birthday is a huge celebration for me, because I am so happy and so thankful to have my children. I think sometimes their birthday’s are more of a celebration for me. I’m so glad to be their Mom, and I’m so glad to have another year to love them. This year for Maddi’s birthday, it was a bit more special for me. I’m so glad to have her with us. We had a nice party at our house for all of her friends, and she was showered with love! So many people showed up for an ice cream party to celebrate Maddi. She was amazing through the whole thing. I worried she would tire and get overwhelmed, and she didn’t. She greeted each guest, and made her rounds talking and including all the children who came to play. She was friendly and outgoing, and it amazed me. People stopped me to tell me how wonderfully full of life she looked, and how outgoing and cheerful she was.

I would love to say that she has escaped this disease unscathed, but I don’t think anyone is that lucky. Where there used to be boundless energy, is now short and sporadic- tiring easy and needing lots of breaks. Where there used to be peaceful sleep, has been replaced with bouts of insomnia, frequent night waking, and nightmares. Where there was cooperation, is now replaced with irritability, demands, and easily frustrated. She is constantly hungry, and our attempts to make sure she is nutritionally sound, leave her angry and frustrated. Most things are met with quick reactions that are usually over the top and loud. Her ability to focus on something or to deal with a stressor for more than a few minutes at a time, leave all of us around her exhausted. She’s filled with anxiety and fear over most medical procedures. She’s annoyed with all the medications, and she begs me nightly to “have her normal nights back.”

Currently, we are trying to live each day to the next, while managing the lingering effects of this disease. I continue to share Maddi’s story in hopes that it will reach other families that are struggling with Anti-NMDA Encephalitis, or help someone find a diagnosis. Maddi continues to get stronger and better every single day, and in turn, so do Jason and I. I feel confident that one day in the near future we will be able to say the word “remission,” and put this chapter in our lives behind us.

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