We’ve had an interesting 24 hours around here. Last night Nolan had a bit of an episode. I woke up around 3:00 to hear him crying. I changed him and tried feeding him, but couldn’t calm him down. His agitation escalated a bit, and soon his temp was rising. I gave him tylenol and tried rubbing him down with a cool cloth. But he was on a mission. It wasn’t long until he started displaying some seizure like movements. His right arm did a small repetitive tremor. His eyes were bouncing at the edges. Even his tongue thrust seemed different. I knew I had to take him in. I headed to the ER, and since I called en route they were ready for us when we arrived. Nolan didn’t do the arm tremor in front of them, but I had caught it on video using my phone. They were able to witness everything else. Including a fencer pose, a back arch, general discomfort, as well as the eyes and tongue. They tried motrin to bring down his temp, and a medicine to slow his system a bit. After about 90 minutes we were able to get him to a nice calm regular state. He has rested well since then. Nonetheless, our specialist wanted to see him on their turf. So an ambulance ride was in Nolan’s future.
To be clear, we don’t necessarily think Nolan had a full on clinical seizure for 2+ hours. It was more of a general episode that include some seizure clusters.
After all was said and done the trip down south was pretty minimal. The neurology team checked him out, consulted with our regular neurologist, and came up with a treatment plan. Rather than going back on the medicine we know caused some agitation and tummy issues, we’re trying a new one. And we’re now also armed with an emergency dose in case something bad happens in the future. I am also to monitor him closely for 24 hours, so we’ll be getting some quality time tonight and tomorrow.
I knew we were risking some seizure activity with the changes we’re making to Landon’s meds. But Nolan caught me off guard.
I’m tired. I’m discouraged. But I’m glad he is comfortable. And I’m glad we have a plan.
Here’s hoping everyone rests much better tonight!
Cutest patient around…
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Bless his little heart. We are continuing to pray for all of you.