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Seizure Data and Other Updates on Maggie

For 2021, I decided to try a different strategy for logging Maggie’s seizures. Before, I would list it on a note, sometimes using a paper notebook and other times, using a notes app on my phone. These were convenient methods to quickly jot down seizure activity, but they weren’t very helpful with analyzing the data. For the New Year, I took a few tricks from working in education and created a Google Form for seizure tracking. (As a side note, using Google Forms is great for a Demonstration of Learning or quick quiz because the data is crunched automatically and the feedback is immediate).

The questions I used on my Google Form are 1. Seizure date; 2. Seizure time; 3. Seizure duration, which is a drop-down box with <3 seconds, 3-5 seconds, 6-9 seconds, 10-12 seconds, 13-15 seconds, and >15 seconds; 4. If >15 seconds, how long was it? I could’ve added more questions, like seizure type or what was she doing during the seizure, but I decided if I was looking for a quick log, this was the bare-bones information I needed to get a big picture of Maggie’s seizure activity.

Since the New Year, Maggie has shown significant improvements concerning seizure frequency and duration. What has helped most recently was switching one of her medications to a different one. When I had her follow up with her neurologist, he explained that Maggie seems to have plateaued and when we have our follow-up in June, she would likely be in the same place if we kept everything as is. At that time, in March 2021, Maggie would have 3 to 7 seizures per day with seizures averaging 8 to 12 seconds in duration. Sometimes, she’d have more and longer seizures, but this was her activity on a typical day.

In April 2021, Maggie has not had more than five seizures in a single day. She’s had several days with only two seizures, which had never happened before. Three was her lowest ever before this month. Many of her seizures now are shorter in duration, ranging from three seconds to seven seconds on a typical day. When she has them, instead of conking out in a recovery nap for about twenty minutes, she literally shakes it off like a dog after a bath, stomping her feet and shaking her body, but bouncing back fairly quickly to whatever she was doing before the seizure.

So much of Maggie’s prognosis is dependent on seizure activity. If seizures are controlled, she will have greater success academically and therapeutically. If seizures are frequent and long, then she will lose her learning gains. With her seizures improved, we (meaning myself and her teachers) are seeing dramatic improvements in her growth. She is learning and she is vocalizing more (not talking, but she is learning how to use her voice like she’s practicing an untuned instrument). Her functional play skills are improving. She understands commands better, especially when paired with visual and kinesthetic cues, like patting a chair while saying “sit down please.”

In addition to improved seizures, we’re working on a few other modifications. For one hour a day, Maggie wears an alternating left/right eye patch and orthotics on her feet. Honestly, she hates it so we do this at home instead of having this be part of her ABA treatment. Before school for an hour, I patch her eye, put her orthotics on her feet, and she typically looks resigned and defeated for that hour, moping and trudging along. It doesn’t help that the only shoes we could find that fit the orthotics (and they must be worn with shoes) are Youth 2, which are so big she looks like she has clown shoes on. It takes some time to see whether these strategies eliminate toe walking and becoming cross-eyed, but that’s okay.

I hope and pray for seizure-free days. Of course, I want her seizures to go away altogether. They are not likely to disappear suddenly. It’s just the nature of her diagnosis. Lennox-Gastaut Syndrome is notoriously medication and intervention resistant. The realistic goal is seizure reduction and every day that she only has two, that the two that she has are under five seconds, and that she literally shakes them off and goes back to the business of playing is a win.

These days, we’re having more wins and for that, I am grateful.


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