Jack’s long seizure-free streak was broken last night. He had an almost four month run, this was a record that we have not seen in quite sometime-actually since he was one when he started the ketogenic diet. What attributed to the seizure? Perhaps it was a change in pressure due to the looming hurricane on the east coast, the lowering of a dose in medication, or it was just time for one. The day of a seizure & the day after are rough to the say the least. Last night, Jack had a full-body convulsing seizure around 10:15pm. He typically sleeps for several hours afterwards, but over the last year, he has awoken within thirty minutes of the seizure & this is not a good thing. Jack was awake & roaming the house exactly thirty minutes later. Walking around being even more extra fidgety, pretend sleeping while walking, rolling around on the floor, piling his legs on top of mine. It wasn’t until after midnight that he finally knocked out for the night. His sleep was peaceful, but when the tiger woke up, it was on!
8:15am he begins the day by screaming my name repeatedly for me to pick him out a shirt. Then he wants eggs, turns on the stove & runs back to his bed only to make a jump landing. While the master is awaiting breakfast in bed, he pulls the heavy plantation-style blind down on top of him. When Jack gets restless, the blind cord is his fidget spinner-the cord has literally been cut! Whilst eating his eggs, Jack uses the spoon as a hammer on the side of the bowl, striking the bowl each time with powerful force. Guess what happens next, he breaks the bowl! As I’m trying to get clothes washed & hung out in preparation for the hurricane, Jack will not leave me alone. He’s worse the day after a seizure than his normal days & those are pretty bad. He followed me out to the clothesline to get his wet pants because he wanted a specific pair & was going to wear them wet. After a little convincing, he put them in the dryer. Think of Richard Simmons on LSD, crack, & cocaine all at the same time! Energy through the roof, no satisfaction can be found (I think Mick wrote that song just for Jack), constant pulling & tugging of his clothes, annoying, clingy behavior. The list goes on & on of things he did today. It is enough to make one want to drink a lot of liquor, but I abstain.
This is what a seizure does to the brain. It causes all sorts of misfires & simply makes the person feel all out of sorts. We all realize that Jack is not responsible for this behavior, however, it does not make it any easier to deal with when you’re living in those moments of pure & utter terrorization.
One of the things I love about Facebook, is the ability to connect with other parents that have kids with Dravet. We can learn so much from one another. I asked a question earlier today regarding the “day after” behavior we see in Jack & one mother messaged me to say she sees the same thing in her son & gave me some suggestions on what to talk to the doctor about prescribing to help curtail this. Dravet kids are so sensitive to medications with each responding in different ways either positively, negatively, or not at all. It’s really trial & error. If only there were a “day after” a seizure pill.
It’s now 1am & Jack still isn’t asleep. He’s had his sleeping pill for two hours now, how does this child function with so little sleep? I started writing my blog as I sat outside on the porch this morning hiding from Jack which the date was 9/11. I thought back to 09/11/2001. I was sitting in my recliner nursing Jack in my nightgown, 16 month old Coleman roaming around the house, & me half watching the Today show with Matt Lauer & Katie Couric. How times were so different. Me the mother of two little boys, boys that were sweet & manageable, but feeling terrified at home alone wondering what our nation was facing. On 09/11/2018, around the same time as the first plane crashed into the twin towers, I still sat in my nightgown & felt scared. Scared of the possibilities we face daily with Jack. Times have changed drastically for Matt, Katie, myself & my family. Matt is getting to sleep-in now due to his creepiness, Katie no longer has to get up in the middle of the night by choice, & me, I’m still stuck at home during the Today show hours in my nightgown trying to figure out how to make it through the day without having a nervous breakdown. 09/11/01 & 09/11/18 will be days I always remember what I was wearing, where I was sitting, & what I was feeling at that exact moment.
My life is the Kermit the Frog meme that I get a kick out of every time I see it, but it doesn’t only apply to Sunday’s, it applies to every.single.day.!