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Three Steps Back...

Yesterday, Maggie took a couple of steps back. It was a rough day. She woke up emotional, crying with no clear indication what was upsetting her. Was it a headache? Could she feel like her seizures were going to come harder and more frequent? Was her emotional state what triggered the additional seizures? No one knows, except maybe Maggie and try as I might, she can’t tell me what she’s experiencing.

She didn’t want to drink her “milk” (diluted heavy whipping cream). She didn’t want to eat her breakfast (bacon, butter, and two raspberries). She definitely didn’t want to take her medicine. She’s recently started shaking her head vigorously to mean “no.” She didn’t want to do any of those things, protested with vigorous head shaking, but in the end, she ate and drank it all with a compromise. I let her run around and snuck in bites and sips while she played with her toys. She is her mother’s daughter and when she’s decided she’s not going to do something, like sit and eat at the table, she will dig her heels and refuse. I’m not going to force feed her, so I find another way and in the end, she gets it down. Normally, she eats with gusto.

Before she left for school, she already had three seizures.

When I picked her up, her teacher told me that Maggie continued to struggle throughout the day. She had three more seizures at school, one as long as 16 seconds. These days, her longest are about ten seconds, but when she was first diagnosed, they could be as long as 30 seconds. After the 16 second seizure, she slept for an hour and a half. They didn’t make much progress, academically. Maggie was noncompliant, whiny, and didn’t want to participate in her activities like working on PECS (picture exchange communication system).

We got home and normally Maggie is tired after her day at school. She doesn’t typically nap at school, only if she needs it. We rested together, Maggie, Hazel, and I, watching TV until dinner time. In my arms, Maggie had another seizure and cried. I decided that before bed, she’ll take her rescue med just in case she was building towards cluster seizures. It wasn’t just because she was up to seven. It was the all day emotional state. It was clear that there was obviously something wrong.

Cluster seizures are the worst part of Lennox-Gastaut Syndrome. It’s like a trip wire in the brain that keeps firing. Instead of her baseline of three to five seizures, she’ll have seizure after seizure. The more upset she becomes, the more frequent. Cluster seizure, if they’re not stopped, lead to emergency room visits. We want to avoid clusters at all costs. There are different rescue medications for seizures. She has Diastat, but that is to be administered only if her seizure is lasting five minutes. That never happens. She’s never had a seizure longer than 45 seconds. Since that rescue medication doesn’t help Maggie’s clusters, we have Ativan. That’s an as-needed medication to be administered every twelve hours until Maggie returns to baseline.

She didn’t cluster. I think the Ativan quelled what was going on, but the night didn’t go any smoother. She didn’t want to go to sleep. She fought going to bed. Both kids wanted to be held by me, alone. When I held them both, they’d push each other and otherwise antagonize one another. They were vying for my attention, my undivided attention. As soon as Hazel was nodding off, Maggie would do something that would jolt her awake, like banging her hands against the wall loudly. Finally, I pulled both kids to the King size bed and held them on both arms. If I could get them to sleep, I could gently carry them to their beds. Maggie wiggled her way free and ran around the room. New plan, I thought, if I could get Hazel asleep, then I could take Maggie to the other room so she doesn’t wake Hazel. Maggie climbed up the side of the bed and, very deliberately and purposefully, bit an almost asleep Hazel on the big toe.

Hazel screamed, of course. The look on Maggie’s face showed she realized she did something bad, and she ran into her tent full of stuffed animals. I let her go, focusing on Hazel instead.

Maggie had gotten so much better with mouthing, biting, and aggressive behaviors. This was unexpected and came out of nowhere. The only good thing was Maggie looked like she knew she didn’t something wrong. Nonverbal kids with developmental delays often bite because they get frustrated and this gets them attention. I didn’t give her attention. I was angry and I tried my best not to show it. I didn’t want to shower Maggie with attention. I showered Hazel with it instead. Hazel soon went to sleep, and I went for Maggie.

I held Maggie in the armchair, rocking her, keeping her in my arms with a firm hug. I rocked and rocked and rocked until she finally succumbed to sleep in my arms. I gently rolled her in to her bed, then gently picked up Hazel from my bed and placed her in hers. Maggie wasn’t really asleep. I left the room to brush my teeth and when I came back, there she was, sitting up. I picked her up and carried her to my bed. We slept all night with Maggie in my arms. She had an occasional tremor, not long enough to count as a seizure.

Sometimes I wonder if there’s a little devil inside of her, like those Jesus shoos out of epileptics. I wonder if she’s tormented by something beyond scientific explanation, something that compels her to misbehave or triggers seizures. I don’t know. I just prayed for healing and better days.


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