I didn't write about this earlier because I was waiting to see what happened. On Saturday, after the fundraiser, Soren had another tonic seizure. Ugh! I called the neurologist on call to see if we should increase the medicine. He asked if there might have been something to have triggered the seizure.
Now typically, Soren does not have a "trigger" like strobe lights, swinging, or heat. He has a friend whose seizures used to be triggered by heat. This little boy would come to therapy only in his diaper because even wearing clothes would overheat him and trigger a seizure. But Soren's seizures always just sort of happened out of the blue, regardless of where we were or what we were doing.
BUT, when you have seizure control, seizures can be brought on by extreme situations, like heat or illness--something that can compromise a child's system causing the seizure resurface because the body is busy dealing with the other crap that's going on. Make sense? It upsets the old apple cart.
That day at Soren's fundraiser, it was REALLY FREAKIN' HOT! And since Soren doesn't drink water like a typical kid, he doesn't really have a way to cool himself down. So I told the doctor this and he said that due to that extreme situation, we should pause on increasing the medicine until we see more seizures. I was fine with this. Soren didn't seize Sunday or Monday, so we wrote this off as an educational experience to keep him out of excessive heat.
Then Soren spiked a fever Monday night. Otherwise he was his normal sweet self--no running nose, cough, vomiting. He was just hot. So we gave him Motrin and put him to bed. The next morning he was REALLY hot. I took his ear temperature (which is notoriously inaccurate) and he was at 103 in one ear and 104 in the other. I didn't do a rectal temp, which is much more accurate. I felt that was a little invasive for 6 am. I got more Motrin in him and put him in a cool bath. I cancelled his morning therapies.
BUT just this week, we started an intensive therapy program (which I'll describe in detail in another post). It's 3 hours a day, 5 days a week, for 3 weeks. We've been planning to do it for about a year now. It's in Brentwood from 1-4 pm, so I had to make sure Moira went to a camp with an aftercare program so I could haul my butt from Brentwood to Pasadena by 6 pm when camp closes. I had to cancel all Soren's afternoon therapies for 3 weeks. It's taken a lot of preparation and juggling.
So, even though Soren was feverish, I took him to his 2nd session yesterday. Besides being hot, he was still acting normal. Smiling, charming, cooing. They took it easy on him and he did great work, lasting the full 3 hours.
Then as we were driving home, Soren had another seizure. I hate when this happens because I'm driving and there is nothing I can do. I didn't even know it was happening until I heard Soren make a scary sound. I turned to look at him, and he was frozen, lips blue, barely breathing. I caught it on the tail end, because he took a gasp of air and came out of it.
When we got home, it all fell apart. Soren was hot. I drugged him some more. I gave him a cold bath. He was furious. I called my sister (the pediatrician) for advice. She said I was doing the right things. She also pointed out that the seizure Saturday could have been from him getting this virus. Certainly the one while driving was from that. I tried to feed Soren, but he only ate a little of his guacamole. Enough to get his Lamictal in. By now his nose was red, his eyes were puffy, and he looked like hell. I got him to drink most of his bottle and laid him down on the floor to rest while we ate.
Well, he threw up his guacamole, though he waited long enough that he kept his fluids in. Thankfully he's laying on his side most of the time now, so it all came out quite nicely. We put the poor boy to bed, knowing the best thing for him was sleep.
So here we are this morning. Soren still looks like crap. His nose is running like crazy, his eyes are still quite puffy, and he's still quite hot. I haven't seen a seizure yet.
Needless to say, I had to cancel all his therapies, including the intensive session that we've been waiting SO long to do. That's just the way things go, isn't it? For all his troubles with seizures, Soren is actually a rather healthy kid. He doesn't get colds very often, he's never had the stomach flu. But just when we schedule this thing we've been planning forever, looking for the "perfect" time, he's sicker than I've ever seen him (with a normal kid thing, that is).
Ah well. He'll get better. And we'll get the intensive therapy in when he is. Just another unexpected bump.
Amy
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