Thankfully, most days with Eloise are great — fantastic, even. But not all days are all good. Today Eloise went to bed not having had supper. And, spoiler alert, it wasn’t because she being punished.
After Eloise had the Roseola virus for the entirety of our vacation, we made the decision to start wearing masks again. At work. In grocery stores. After all, everyone-you-know-is-sick season is coming.
Even with extra caution, Eloise still had 5 seizures today.
We were spoiled by May-July with only 1 seizure, and that was the day after we’d forgotten to give her medicine.
But the last two months? The count is now at 16.
When our days are seizure-free, it’s easy to forget there’s this disease lurking behind her happy and giggly exterior. But when those seizures come, a quiet descends upon our house. Brian and I speak less than usual, snap at each other a little easier, and walk around with worried looks on our faces.
Because we know.
We know kids with SCN1A issues (the gene responsible for her seizures) can go long periods with no seizures then boom💥. A huge seizure comes. And, with it, sometimes, come severe regressions or even death
So after her 5th seizure today, we gave her rescue medication. Will it stop them from coming back tonight or tomorrow? We have no idea. But it’s the best we can do.
We don’t know if these will be the last seizures we experience for awhile or if they’ll become more regular again. Our hope can’t be in seizure control.
Our only option in tough times like these is to find a way through it. We always have.
So, in closing, we wanted to ask you for a small favor today. Hug your loved ones tighter and breathe a prayer of thanks they’re with you another day. Cause that’s what we’re doing tonight.
Gosh, these seizure filled days make us extra grateful for the ones where she’s okay,
Mallory, Brian, and Eloise (who is currently sleeping next to me so I can feel reassured she’s doing okay)
Eloise The Tiny Fighter 
A big hug for the 3
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❤️❤️❤️
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Hoping and praying for the best for the tiny fighter.
Grandpa and grandma Thomas
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Thank you all ❤️❤️
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Personally I would give her rescue med after the first seizure.. But that’s just me.. Especially if she has a history of more to follow.. Iam a retired bedside oncology nurse and when we had a patient with just one seizure they medicated to prevent any further.. Not understanding why they wouldn’t want you to give rescue medication after first seizure..I would certainly clarify when to give it.. But again why would they want you to wait for a second seizure when she usually will have another.. Sorry if I have over stepped. ♥️🙏.
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I’ve learned every family and every doctor seems to have slightly different guidelines so no worries. Eloise’s seizures are usually focal seizures that are shorter than 2 minutes. She used to have 5-7 per day before her medication dosage seemed to help. The advice we got was “if it looks like a seizure she can’t get out of, lasts more than 4-5 minutes, or if they are coming really fast for her, then use rescue medication.”
We gave her rescue medication during her 5th seizure, since the time interval between was less than 2 hours. But she still had another 3 hours later. And just started her next day with a seizure (although this 7th seizure was very very short and mild).
But you have more experience than we do. 🤷♀️
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You know a Mom is scared sh—less when you have your child sleeping next to you ♥️🙏
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