Tag Archives: Simple partial seizure

Connor is a fish.

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.

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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!

Good morning, everybodeeeee!
Good morning, everybodeeeee!

I will leave you with pics from our awesome week in Florida:

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Dirty Banana at Sharky's.
Dirty Banana at Sharky’s.
We borrowed Chris's parents' "fun" car for date night.
We borrowed Chris’s parents’ “fun” car for date night.
Getting hot dog's at Anita's sandcastle.
Getting hot dog’s at Anita’s Sandcastle.

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Checking out the manatee at Mote Marine.
Checking out the manatee at Mote Marine.

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Headed home.
Headed home.

 

 

 

 

Slow Motion Changes

It’s a strange sensation to watch your child develop in slow motion. Every new skill gained is not just exciting, but so…noticeable. Some parents say things like, “Oh, he just suddenly started crawling” or “she seemed to walk overnight.” Not in our world. It’s kind of fascinating, really, when it gets broken down into bits and pieces — often with the help of a physical therapist trying to explain it to you. How many parents actually notice the first time their kid reflexively throws their hands behind them so they don’t fall backwards from sitting, and even if they do, do they realize how significant that is? Connor isn’t quite crawling, but I’m watching each step along the way. Every new positioning of his legs and body. If you have a typically developing child, did you give it much thought the first time they got into a side sitting position? Because that’s a really big deal, too. What about when they were sitting and playing and pivoted in another direction? The first time they passed an object from one hand to another? Used the pincer grasp? Banged two objects together? Maybe you were excited by the first mamama, but were you just as excited when you finally heard bababa?

The last several weeks have been incredible. Connor used to hit milestones with a lot of lag time in between. And when it seemed like he was about to hit one, it would take forever to  actually happen. There was that quick head lift that made me think he was on the verge of having head control, but that took several more weeks. There was the first time not completely flopping over from sitting, but it was months before he mastered it. But we have had a lot of firsts recently, followed by quick mastery. He threw his hands forward to catch himself from falling forward in PT, he rolled to his belly finally (that was just a stubborn thing-he actually rolled the other way on time) and realized rolling could actually serve the purpose of locomotion, he became mobile, he started using consonants, he can pull himself into a sitting position without help, his interest in what is going on around him has quadrupled and he fell in love with Elmo. He started comfortably sitting in the grocery store cart and observably recognizing certain words.

He’s doing really well despite an uptick in recent seizure activity. But he’s also had recent med changes in the weaning of vigabatrin and adding trileptal, so I’m remaining optimistic about that improving. They don’t seems to have a lingering affect, though they have morphed in appearance the last few days. He was having what were suspected to be complex partials in which his body would clench up and he’d stare off to the side unaware. Now they start with him losing awareness briefly and he clenches up, but then he regains awareness and is responsive while his mouth twitches like crazy. It’s like a weird mix of complex partial and simple partial. But what they they truly are remains to be seen.

And the remolding helmet only needs to be worn at night now now!

Through it all, he’s happy and giggly. Well, except for the week from hell with those two teeth coming in. They still aren’t out, but he seems to have settled down. I will go in and get them myself if they start up with him again. I don’t do no sleep.

Most new learned skills are awesome. Just not the ones that involve pouring milk all over the backseat.
Most new learned skills are awesome. Just not the ones that involve pouring milk all over the backseat.
Whoever that kids is, he is awesome!
Whoever that kids is, he is awesome!
Now that the carpet is sufficiently full of milk, I'd like to replace it.
Now that the carpet is sufficiently full of milk, I’d like to replace it.
How long do I have until mommy starts making rules about TV?
How long do I have until mommy starts making rules about TV?