Living with AE

It’s been three months since Maddilyn’s diagnosis. Three months since we rushed her into the emergency room, catatonic; scared, and not really sure what was going on. It’s been three months filled with doctor’s appointments, medications, needle pokes, hospital stays, exhaustion, frustration, sadness, and joy. Three months since our lives were turned upside down. I know that three months doesn’t seem like a long time, but for me, it’s felt like an eternity. Each day, it’s becoming harder and harder to remember what life was life before all of this. At the beginning, I kept it together by telling myself: it’ll all be over soon. It won’t always be this way; yet, as the days creep on, and the abyss of unknown grows, I’ve started to tell myself: this is your new normal. Adjust, and get used to it. In the short term, that really helps me to feel better, but it’s those moments when I’m alone with my thoughts, that I think about all the things that I have no control over when it comes to this illness, and I’m overcome with sadness.

About three weeks ago, Maddi was out with her Nana, and she had an episode of rage where she was completely confused and disoriented. Her Neurology team was concerned that she was having an encephalitis episode, and wanted her to come in asap to be further assessed. After going to the ER for an emergency admit, it was determined that Maddilyn was weaned off of her oral steroids at a rate that was probably too fast, and the most obvious cause of her aggression and irritability. It was decided to give her 3 high pulse doses of steroids, 2 rounds of IVIG, and then a course of Oral Steroids at home, again. How frustrating. Maddi tolerated the steroids and IVIG, but since coming home, has not shown much improvement to her irritability and reactivity. This is the most frustrating part of the entire illness, is trying to find the strength and energy to manage these really challenging behaviors.

Last Thursday, Maddi was able to get squeezed into a cancellation for a Neuropsychiatric Evaluation. The evaluation went well. The initial assessment was that Maddi had obvious deficits in her short term memory functioning. The Psychologist assured us that they would have a great plan of action to help Maddi, whatever the results were. I’m anxious to get them back and start to figure out the best way to get her back to pre-illness functioning. She started Kindergarten last week. We decided to homeschool her this year due to the challenges her illness creates for her behavior, as well as all the time we knew she’d be out for being overwhelmed/doctor’s appointments/hospital stays. She’s doing very well. She is enjoying learning at home, and I’m enjoying teaching her.

Her maintenance dose of Rituximab was also scheduled for early September, and I’m looking forward to it, seeing as she showed the most improvement after Rituximab.

This journey to recovery is long and it’s hard. I’m amazed at my sweet girl, and how much she deals with on a daily basis. Despite feeling uncomfortable most of the time, she smiles and laughs, and just makes the best of the medicines, IVs, hospital stays, etc. Where this kid got her strength, is just beyond me. I’m so proud of her.

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