Happy Halloween!!

img_20161031_190725Every holiday, even as insignificant as Halloween, means so much more to us now. The fact that Maddi is walking, talking, laughing, and jumping is a blessing we no longer take advantage of. I’m so happy to report on her wellness. There is hope in the darkness of this disease! Maddi is doing better each and every day, and we are closer to pre-illness Maddi than we have ever been. It’s such a wonderful feeling!

Today we had Plasmapheresis number “I’ve lost count, but thank god for this life changing treatment!” Maddi has had every treatment suggested for NMDA Encephalitis, but NOTHING has inflicted this much change, as Plasmapheresis has. Right now, we are scheduled for weekly treatments until the end of November. I’m not sure what’s going to happen then. The effects of Plasmapheresis are short lived, but I’m hoping Maddi’s trifecta of treatments: IVIG, Rituximab, & Plasmapheresis will keep her disease at bay. She’s very desperate to get her central line removed (and so are we!) Her recovery is nothing short of a miracle. She is down to TWO medications a day. We are stepping down to 2ml of steroids (started at 13.5ml). I’ve noticed her appetite seems to be returning to normal, which is a blessing since the poor baby has gained nearly 20lbs in the last 5 1/2 months. We stopped her Risperdal. I was never convinced that it was helping, and recently asked to discontinue it, but her Neurologist insisted that we shouldn’t take too much away since we were tapering the steroids. After some reading of medical journals and my professional experience with the drug, I decided Doctor’s don’t know everything (especially with this disease) and Jason and I decided to discontinue it. Since that day 8 days ago, Maddi has had zero screaming or aggressive outbursts. She has been compliant, helpful, more patient, and less reactive. I really feel that the Risperdal was contributing to her remaining aggressive behavior- and the medical journals supported that psychotropic drugs are not helpful for NMDA and can make symptoms worse. Unfortunately, Maddi will continue to be on seizure medications for a very long time. This disease has damaged her brain and it’s unknown whether or not she can be weaned off of the medication without having seizures. I was told at the beginning, a minimum of 14 months. I think at that time her team will evaluate her wellness, and make a game plan as on how to move forward. In the meantime, we continue to pray for no seizures, and try to live each day as normally as possible- keeping her free of overexertion and stimulation by giving her lots of play time and the ability to rest when needed.

Maddi is currently in week 11 of homeschooling. Being her teacher has been such a blessing; especially watching her brain in action first hand. It’s amazing what our bodies can do. It’s amazing the amount of healing she’s done. Thankfully, Doctors were able to diagnose Maddi right at the start of her cognitive decline, so I believe she suffered minimal damage. Developing brains are so flexible, and we were told that there was great chance her brain would heal it’s self. Her healing is very evident in her school work. She’s soaking up Math and Phonics. This past weekend, while in the car, she just started reciting addition problems for numbers we’ve never even discussed before. I was shocked!!!! She shouldn’t be doing this, yet she is!! Praise God! She’s devouring 2-3 phonics lessons a day, and is trying to read everything she gets her hands on!

Thank you for following along this journey with our family. Thank you for the prayers. Thank you for the kind words of support. Please share this blog on your Facebook page, your own blog, etc. Get awareness of Autoimmune Encephalitis out there! The sooner this disease is diagnosed, the better the prognosis!

Please do not hesitate to contact me at maddibeatsae@gmail.com with any questions!

-Tricia

 

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