Q&A- June 26th, 2016

I just want to welcome every one to my blog. I’m so glad you’ve found us! I hope that this recount of Maddilyn’s treatment, recovery, and my perspective along her side, will be helpful to one of you in gaining an understanding of NMDAR Encephalitis, get a diagnosis, or just feel some place you belong.

I have received quite a bit of feedback in the form of emails and comments on my blog posts. I’ve been asked a lot of questions, and I just wanted to take a moment to answer them

“How did you know Maddilyn was sick? What were her first symptoms?”

The very first signs that something was wrong with Maddilyn, were when she started waking up in the middle of the night delirious, confused, and acting out aggressively, while during the day she cried excessively and became very clingy. For months, her Dad and I had seen that there were behavioral changes, but we quickly dismissed them as typical childhood problems (starting school, getting a new sibling, grandfather being very sick, change in childcare, etc). When Maddi stopped sleeping and suddenly became aggressive towards us, we knew something was very wrong. She was, up to that point, a very gentle child. Then she suddenly stopped eating, and began to loose weight. Her aggressiveness started to translate into the day time, and she would have these very odd behaviors such as staring off into the distance and being unresponsive, that we later learned were partial seizures.

“How will I know if my child has Autoimmune Encephalitis?”

The best way to answer this is to tell you to trust your instincts. You know your kid the best. With Maddi, I KNEW something was not right. I have experience working with children who have challenging behavioral problems, and everything about Maddi’s behavior was off, and did not translate into a typical behavioral problem to me. Of course, I doubted myself, hence the waiting so long to seek out treatment. I believed that I could fix this, like I’ve helped other parents with their difficult children. It was only when Maddilyn did not respond to tried and true behavioral strategies, that I began to realize something else was at play. The important thing to remember is that AE looks different in every child. The doctors were reluctant to even consider NMDAR for Maddilyn because she lack the motor deficits that are most typically seen. Your child could be negative for Anti-bodies and STILL have AE. Trust your gut. Trust your judgement. Push for answers. Never give up.

“What is Maddilyn’s treatment plan? How long will it take for her to get better?”

Right off the bat, the Doctors initiated a 5 day steroid Pulse, along with two full treatments of IVIG (Intravenous Immunoglobulin). She was also given Trileptal for her seizures and Risperdal to help with aggression and irritability. This was completed over a 5 day hospital stay. Once we were released, Maddi showed some improvements with oral steroids at home, but continued to be aggressive over the next week. At this point, the aggression had decreased significantly from before diagnosis, but it was still there, despite the Risperdal. Three weeks post initial treatment, it was decided that she would begin a second line treatment of Rituximab. She will have two high dose infusions, set two weeks apart, followed by a maintenance dose every 12 weeks. It was also decided that she would have a second round of IVIG at her second Rituximab infusion. She continues to taper off of oral steroids, but will remain on anti-convulsants until she is seizure free for 14 months. There are more aggressive treatment options available, but we are using them as a last result (plasmapheresis, chemotherapy.) We were told that there was no timeline for her wellness, because everyone responds differently.

“Did Maddi have any side effects from the Rituximab?”

Maddilyn had an infusion reaction from her first infusion of Rituximab. During the first infusion, she developed a dry cough, that subsided after the infusion rate was decrease significantly. She had zero infusion reactions during her second infusion, and so far has been free of side effects.

“Did you see any changes after the first round of Rituximab?”

Yes, I think so! I saw Maddi gain more energy, and she seemed to be interested in dancing and being active again. The weekend after her infusion, she went on to dance in her ballet recital. I see bits of her returning every day. She smiles more. She laughs more. She seems happy again. Heck, she’s even back to being annoying!

“How has this changed Maddilyn’s life? Your life?”

I’m really glad to say that so far, Maddilyn seems genuinely unaffected by her illness. That could be because NMDAR Encephalitis can cause you to have no memory of what’s happened to you, or it could be that we’ve successfully insulated her from the scariest parts of this. I’m not sure. She seems happy every day. She laughs. She plays. She acts like a five year old. On the flip side, I feel like this experience has changed me greatly. I don’t want to reflect too much on that just yet, because I’m working on a really great post that I hope will be helpful for all parents who are dealing with a critically ill child.

 

Thank you for reading and following Maddilyn’s story. As always, if you have a question regarding NMDAR Encephalitis, Autoimmune Encephalitis, or anything in between, please do not hesitate to contact me. If you would be willing to share your story about your treatment or your child’s treatment, to be featured on my blog, please email me for more details. (tricia.rispoli@gmail.com)

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