This time last year, I was very ready to kick 2016 to the curb. It had been a year of heartache, stress, and constant worry. Going into 2017 seemed promising for Maddi’s wellness. She had been doing very well for several months on a combination of Plasmapheresis, Rituximab, & oral steroids.
As 2016 closed, she developed a central line infection which prompted action to get her steroid & plasmapheresis free. Dr. E, her Rheumatologist, suggested that we consider the addition of Bortezomib, a drug typically used in treating myleoma’s, to eradicate M’s plasma cells that could be remaining. What seemed scary, also seemed to be a very good shot at pushing her into remission. So, after a lot of deliberation and prayer, we decided to move forward with this new drug.
In January, Maddi started to have new inattentive and hyperactive behavior. After meeting with her Neurology team, it was decided to update her MRI, get a new EEG, and sleep study.
We moved into February with a solid plan. Steroids and Plasmapheresis were discontinued.
By March, Bortezomib had been ordered and approved by our insurance company. The decision to remove Maddi’s external ports and replaced with an internal power port was also made. Maddi will be on monthly IG replacement for the next several years. That surgery was completed right after we came back from the Florence Fourth Road Race in Durham, North Carolina. Our family made the 500 mile trip to walk a 5k in support of the Autoimmune Encephalitis Alliance. It was a wonderful weekend of meeting other families, and being apart of a cause that was so near and dear to us. Jason and I finished the 5k in just under an hour, which was a feat, seeing as neither of us were in shape, and the course consisted of many uphill stretches (we live in Florida! We don’t have hills!).
By early April, Maddi continued to improve with each day. Life started to feel more and more normal. Test results kept coming back as “within normal limits, and we started to believe the word, “remission,” was right around the corner. We planned a special Brain Party to celebrate a year in this journey of wellness, and her Uncle Bruce even flew in from Texas to be here.
The first week of May, right before her Brain party, Maddi fell ill with Strep Throat, followed by an unknown virus. This combination posed too much for her immune system to handle, and caused her to have a complete symptom flare.
By early June, her behavior changed once again. She became angry, irritable, reactive, and verbally aggressive. In late June, I relayed my concerns to her doctors, who continued to insist that her disease was no longer active, and that any behaviors we were seeing were the result of a potential behavioral problem. Doctors pushed psychiatry, and I felt panicked. It felt like the beginning all over again. I felt like no one was listening. Finally, after a very tearful call with her Neurology team the first week of July, I was reassured that they would help Maddi.
We met with them the next day, and as they walked in the office, they were able to see Maddi right in the middle of one of her meltdowns. Oral steroids were ordered that day, and within 48 hours, Maddi was back again. We were able to enjoy a family vacation.
We completed a second round of Bortezomib in July & August, and then thankfully, the rest of our year was filled with blessings. Maddi continued to do well on oral steroids through the summer. After several weeks, we began to wean her, but once we hit 2.5 ml, her behaviors flared again (caused by an abscessed tooth) and we had to increase her once again. We made it through Hurricane Irma with no structural damage to our house. In school, Maddi started the first grade; our second year homeschooling. We even adopted two kittens!
In late August we received a letter in the mail that Maddi had been approved by the Make-A-Wish Foundation for a wish. I still don’t know who nominated her, but Thank you from the bottom of my heart. Thank you so much for this treasure, because it was by far the highlight of our year, and a definite ray of sunshine in her life.
In September, Maddi developed foot pain, that was intermittent. This would be later diagnosed as the beginning stages of Osteonecrosis: most likely the side effect of steroid use over the last 18 months. We originally casted, but transitioned to a boot.
After meeting with her Wish Team in early October, it was decided that our family would spend 7 days in Orlando at Give Kids the World Village the week before Christmas to celebrate Maddi’s battle with Autoimmune Encephalitis. I promise to write all about our trip soon!
As I write this today, 12/31/2017, Maddi continues to do well. I am so thankful for her healing this year. I’m so thankful for the village that continues to surround us. I’m thankful for our medical team, and network of advocates. I no longer feel like we are moving into the unknown. I feel positive that 2018 will bring a year of continued wellness for Maddi. I will continue to pursue avenues to be an advocate for her, raising awareness for this disease.
We covet your prayers & support.
2 Comments Add yours
Thank you for continuing to share your family’s journey in such a public way. I found your blog through the AE Alliance site early in my daughter’s illness.My 4-year-old daughter fell ill in early February 2018 and was diagnosed with AE.
By early March, the test of her cerebral spinal fluid affirmatively confirmed Anti-NMDA Receptor Encephalitis (jeez did that test take forever). We were grateful for the confirmation but anxious about the future and what this disease would mean for us in the long term.
We live in Tampa but we had her transferred to Boston to see a specialist after several weeks of care here. We were very pleased with the level of care she received in Boston (where she was born). She did 3 weeks of inpatient rehab at Spaulding and we were able to return home at the end of April 2018. Watching her run, jump, and ride her scooter now you would never know how bad a place she was in just a couple months ago. AE stole my little girl’s speech, her ability to control her body, and her reasoning. Words cannot express how thankful we are to have her back.
We have been settling into our new normal. She’s doing really well but she’s still struggling with impulse control and aggression. Some days are better than others but I’ll take this over the early onset any day.
I’ve been sharing our journey on my personal Instagram @SoulfulMane but I may consider a blog. Thank you, again, for sharing. Your story has helped me quell some of my anxiety behind this whole thing. I appreciate you 🙏🏽
Lynnet- Thank you so much for reaching out! We are actually in Gainesville, so not too far from you! Send me a message at my personal email firstname.lastname@example.org if you’d like to connect. I am so glad to hear of how well your daughter is doing! 🙂