Well today was sort of a mixed bag.
I guess I'll jump right into it. The bad: Connor had a seven and a half minute long seizure today. We were discussing new wheelchair options with his physical therapist and a medical equipment specialist when the little guy's left side just stopped working. I laid him down on the floor and the jerking started a few seconds later. We ended up having to use the Diastat and call 911. Not fun.
The good: Connor didn't stop breathing. This is the first seizure where he hasn't stopped breathing for at least a few seconds. Ever. Also by the time the EMTs got there the seizure was over, and after a little while waiting to make sure Connor was indeed okay and not recovering from a seizure instead of, say, a stroke (he's already had one, he's at risk for more and the fact that his left side stopped working before the seizure kind of freaked me out) they took off and we didn't have to transport. So that was nice.
Actually this one was pretty different all around. He was lucid through the whole thing-- during the first two or three minutes before the jerking got really bad he was still trying to give me high fives and sign! While this wasn't anywhere close to tonic-clonic movements; his face and the left side of his body were jerking pretty violently. His breathing was labored-- especially once the jerking got really bad-- but I think the oxygen really helped him out there; he didn't lose color even though the seizure was really long.
So in conclusion, I have no idea how to feel about this. I mean, on the one hand he had a seizure. A really freakin' long seizure that involved ambulances and scaring the crap out of multiple people, since we were out and about at the time. It worries me that he's having such a long seizure a mere three days after starting his new medication, too. I mean, I know we have to work up to a therapeutic dose to prevent some really scary (potentially fatal) side effects, but we won't reach that dose until he's been on the med for fourteen weeks. So that's plenty of time in between to be having some extremely nasty seizures. On the other hand, he didn't actually stop breathing this time, so maybe that means the medication is doing something to improve things already. A long seizure with breathing is still much, much better than a long seizure sans breathing.
Oh who knows? At any rate, I put a call in to neurology, and then I went home and spent a long evening commiserating with my pint of Ben and Jerry's ice cream. I feel much better now. Cherry Garcia is a great listener.
Bleagh.
~Jess
5 years ago
4 comments:
Blah. Hate teh seizures. I'm pleased that he didn't stop breathing though. Not that my pleasure is an issue. Still. I think that's a good thing.
Goodness- that is a LONG seizure! It is great news that he kept breathing through it, though.. a mixed bag of sorts.
You really need a dedicated line at the neurologist's office! I really hope there are no more seizures while you slowly ramp up the dosage of medication.
On the bright side, it looks like you can buy Levitra online, though I'm pretty sure you're the wrong gender for it.
I'm so sorry to hear about this latest seizure. Please keep us posted about what your neuro says. I hope it's just ("just"...like any seizure is "just") a breakthrough seizure and not a sign of more to come.
That's true Julie. Except now it is DELETED!!!! Everyone will have to find their black market erectile dysfunction drugs elsewhere.
Me and Generic Viagra are still best buds, though.
I don't expect to hear anything 'till Monday from the docs, but I'll let you all know!
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