Will He Have Another Seizure? We Just Don't Know

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Seizures are tricky and complicated. Shannon Dingle describes her thoughts about the seizures her son is having.

We left the hospital without answers.

As hard as it was to know all I knew during his seizure, my training helped me with sweet peace about leaving without knowing the cause. You see, I already knew enough about seizures to know that we'd be leaving without answers, especially once the CT scan came back normal.

Seizures are tricky. If they can get a child to have one while hooked up to machines, docs can pinpoint what the cause is. If not, you're left without knowing what happened or if it will happen again.

Today at 12:30pm, we'll get all hooked up for an EEG. Simply put, it's not fun. Even more annoying, it's not precise. In about half of cases, a seizure disorder can exist without being caught on the EEG since an EEG is just a snapshot of brain waves during the monitoring time, which will be relatively brief today.

(Think about it like a family picture. Does your family always look like that? No, that's just one moment's representation of your family. Same thing here: the EEG will just be a representation of what's happening with our little man's brainwaves.)

Our prayer is that the EEG will show something if he has a seizure disorder and that it won't show anything if he doesn't. Would you join us in praying that?

Here's the thing: in cases like Robbie's, there's a 50% chance that he'll never have another seizure. And there's a 50% chance that he will. Seizure meds are not something you want to consider unless the diagnosis is clear, so right now all we have is butt valium. (Well, it's called diazepam, but Valium is the brand name for that drug and it comes in syringe to administer rectally since it's unsafe to put anything in a person's mouth during a seizure... so, since we're classy, we call it butt valium.) If he has a seizure again and it lasts more than five minutes like it did last week and emergency responders haven't arrived, then we give the butt valium.

Sweet Jesus, please. We don't want to have to go there.

But we're thankful You're with us if we do: "And my God will supply every need of yours according to his riches in glory in Christ Jesus." {Philippians 4:19}

Thankfully, if he makes it a year without another seizure, we drop back to the typical odds of a 1-2% chance of a seizure, which is the same chance that any other typical kiddo has. As we get further and further from this seizure and closer and closer to the year mark, the odds of having another one will keep dropping.

Until we know something more, I went to my safe zone of plans. Knowing that we need to equip Robbie's Sunday school teachers and other occasional caregivers, I retreated to my happy place of fonts and cardstock and stickers and lamination.

Meet "Robbie's Seizure Emergency Plan."

One copy is safety pinned to his backpack, and I have one copy for every person who cares for him.

I'm trying really hard not to be bothered by the typos (I put the wrong date for his seizure - off by one day - and the wrong number for Lee - which I fixed with a new strip of info and a second run through the laminator - and made one other typo.), but the point isn't perfection but practicality. His teachers each received the info really well on Sunday, which was great. We have three more groups of teachers to give it to (his every other week teachers at 9:30 church, his regular Sunday night teachers since they were out this week, and his mid-week Bible study teachers who we won't see until after we start up again after Christmas), but we know all of them personally, so I know it'll go smoothly.

The last part is as much for me as it is for his teachers.

Oh, and remember how thankful I was that my little guy woke up and told the nurses all about different kinds of lizards? Well, we took advantage of one Black Friday sale.

Who knew reptiles would be 50% off?

 

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