Diastat | Mixed Up Mommy

There is no rhyme or reason to seizures. It’s enough to make you insane. There can be good periods then bad periods with no explanation, no known triggers or med changes.

A little before 1 a.m. this morning Chris and I had an idea we were about to have a day with an unexplained seizure increase. Connor’s Emfit alerted us to a convulsive seizure a little before 1 am. He doesn’t set off the monitor every night, but when he does, we typically see seizures from 4 a.m. on. Right off the bat we knew it would be a funky night if he was having a seizure that early.

We put him in bed with us and slept until the next rough one at 4:52 a.m. Then he had another one at 5:46. Then 6:59. But shortly after, they clustered and he had four in half an hour. It was totally unlike him. We had never had to use Diastat before, which is why I think we hesitated longer than more seasoned parents would have, but we administered it at 7:30 a.m. It was an easier and smoother process than I had built it up to be in my head through all those years I had to be trained to use it as a teacher (I never actually had to administer it while working, and never could have dreamed at the time I would ever have a prescription for it in my house). For those not familiar, Diastat is an emergency med used to stop status seizures (ones that won’t stop) and clusters of seizures and is administered rectally.

Connor slept on the couch with me for two hours afterward, and amazingly, woke up perky happy and raring to go. He did have one shorter seizure shortly after waking (sleep cycles are his big trigger) but it was much shorter than the previous ones, and not long after, he was up and moving around again.

I’m so baffled by seizures and their effect. Connor had nine convulsive seizures throughout the night, required emergency meds, yet wakes up ready to antagonize the dog and terrorize the Christmas tree. But sometimes he has days where he is weak and struggling to walk or eat because of seizures we can barely see or can’t see at all.

I know many parents that believe the full moon triggers more seizures. I never gave it much thought, but last night was a full moon… Who knows? Hopefully we are done seizing for the day. Connor is currently shrieking at Paw Patrol and testing how far he can toss his milk between sips AKA being himself, so fingers crossed the rest of the day will be good.

We did finally get word that he will be starting Epidiolex in early February. I wish it was sooner, but I’m grateful we get to try it so I won’t complain. Fingers crossed it will provide relief.

We just got back from a week in Venice, Florida at Chris’s parents’ house. Since Connor has weekly aquatic therapy, I was hopeful he would enjoy the pool this year, but I honestly expected he’d maybe get in a couple times and be done after 20-30 minutes. Not so. He was in every day with us the whole time. In fact, he quickly learned that once the safety fence was down and at least one adult was in the pool, that was his cue to crawl over, turn around backward about two feet from the edge and back into the water until he hit the step. Aquatic therapy has given him great confidence in the water. Too much actually. He constantly wanted to break free from us and his flotation devices to do his own thing.

It was a great week sandwiched by two crappy seizure days. He did great after we upped his vigabatrin a couple weeks ago, then he had another awful day in which he only had two or three clearly identifiable seizures, but was just off the rest of the day, weak and had a hard time moving. Bad seizure days always wipe out his arm strength, so even if he gets motivated to move, he ends up with bruises lining his forehead. Sometimes his chin takes a hit, too. And once he’s motivated, it’s hard to stop him. We try to keep him on the carpeted areas, but he always gravitates to the hardwood.

We upped his vigabatrin on Sunday morning and the next several days were great. Then Thursday night he woke us up crying, which is very rare. For the second time ever, he had what I guess would be classified as a partial seizure? One arm was extremely stiff and unmovable. He cried until it stopped. I stayed in the room and slept with him and he had 2-3 more of those that would wake him from sleep and make him cry. He also had three tonic clonics throughout the night. I always thought a partial seizure would be a better type to have because it’s just a body part and you are aware, but instead those seem the worst for him–but I don’t know if he cries because it hurts or because it scares him. So Friday he was rather off and not as energetic as usual, though he did perk up the second Daddy got in the pool and commenced his backward scoot. I slept with him again Friday night, our last night in Florida. He didn’t have any seizures until we woke up to leave, but as soon as he awoke he had a short tonic clonic. I thought he was done, but then I noticed his eyes flitting back and forth in a weird way and his eyelids twitching. I waited it for it to stop. And waited. Chris came in behind me. It kept going. Nobody spoke out loud, but a basic summary of our thoughts is as follows:

Oh my God. This is it. His first status seizure,

We’re not going home; we’re going to the hospital.

I don’t want to have to move to Colorado. Are we going to have to move to Colorado after all?

And just as I think we were both struggling to make the call that it was time to head to the ER it stopped. Not a status seizure, but one of the longest he’s ever had. And if we hadn’t been leaving and turned on the lights, I don’t know if I would have known it was happening. We don’t have a prescription for Diastat (an emergency med), but I think it’s time to talk to his neuro about it. Just in case. We have Klonopin on hand in case of clusters, but he can’t swallow it in a situation like this.

Florida, I’m begging you to get your MMJ program up and going. You’ve passed the oil, and I hope you will pass Amendment 2 this fall. And it goes without saying that if Georgia does it too…

Last night his motivation was present, but not his arm strength so it was a battle to keep him in carpeted areas. I’m happy to report this morning is much better!