Seizures Suck

*Sigh*

Seizures suck. A lot. Unfortunately, despite our wishes to the contrary, it seems like seizures will always be a part of life with Teddy. The frequency and severity might change through time, but it seems it will be a matter of "when" not "if."

The latest "when" was this morning. Teddy had a seizure episode that lasted probably at least 15 minutes. I'm guessing because although the entire seizure episode was captured on the camera in his room, I can't bring myself to watching the entire duration. The seizure occurred right around the time that Teddy normally wakes up, so I was blissfully unaware it was occurring because I assumed that Teddy was just still sleeping.

When I went in his room to get him, he didn't smile or respond normally to me. He looked at me, but that was it. He was chewing on his fingers, which isn't his norm. I removed his fingers and tried my fingers in his mouth. He chewed hard. I removed my fingers, and he still kept chewing on air. I thought it was really odd, so I went to grab him a chewelry and my phone to look back on the camera. He didn't attempt to leave his room with me, which is really abnormal.

As soon as I looked at the camera, I said, "We're going to the ER." And then I questioned that decision because he wasn't actively seizing. Then I wondered if I should give him his rescue med, but again he wasn't still seizing. Do I call his neurologist? Do I call his ENT because this is likely associated to his surgery earlier this week? Do I take him to the ER?

I opted for the phone-a-friend option and called Dave at work. Dave said his heart immediately sank and stomach tied in knots. Apparently me calling any time between 7 a.m. and 4 p.m. is a really bad omen. He supported my intial thought that I should take Teddy in to at least the walk-in.

The walk-in took us to the ER, which is only the second time this year that we've gotten transferred from walk-in to ER. (Hey, at least our health insurance carrier can't accuse us of not seeking appropriate care!) The ER doctor initially shared the opinion that I should have called his neurologist but ended the visit 4 hours later by saying that she was glad we brought him in because she felt he needed the IV of fluids to help with his heart rate.

Teddy snoozed in the ER with his eyes cracked open. Never know what someone might do otherwise.

I was glad because he was where he needed to be to get the care necessary. The ER team took care of coordinating everything with both his neurologist and ENT to figure out a coordinated care plan. I still hate being in the ER, especially with all the memories from December. I hate that I get compliments from the nurse (multiple times) on my ability to hug Teddy to restrain him while drawing labs and inserting IVs. Apparently my time at NIH has made me a pro at physically restraining my child while he screams for medical procedures. Not something that makes me feel like a great parent ... but it's better than sitting in the corner feeling helpless while watching others struggle with the same task.

Apparently Teddy didn't like the recommendations I got just yesterday from his neurologist on how to gradually increase his anti-seizure medication, Keppra. (That increase was due to the seizure activity captured at NIH during the sleep study in January ... just now figured out what to do with that information.) Instead, we went from 5 ML to 8 ML daily in a single day. In fact, Teddy got 7 ML of those 8 ML within a couple hours this morning, which left him a bit moody and tired to say the least.

This also means that we won't be delaying the 24-hour inpatient EEG that we were told to schedule once his Keppra was fully increased. I was hoping to delay it until summer to avoid missing school, which was fine per the neurologist's office yesterday. Not so fine today ... even if his neurologist was OK with waiting, we're not. I'll be calling next week to get it scheduled for early May once he's been at this dose for a few weeks, which is what it takes for the levels to build up within his system. I was postponing that partially because of school and also because I wasn't in a hurry to endure the process of hooking him up for an EEG (see the screaming hysterically while we restrain him for medical procedures references above) nor was I optimistic about how well it'll go to keep him entertained and contained for that period of time. Maybe this is God's way of forcing my hand on this ... but the last time Teddy was scheduled for a 48-hour inpatient EEG, he seized uncontrollably and ended up in the ICU to avoid it. (OK, he didn't do that intentionally, but that episode did get him out of the EEG.)

He better damn well not do that again to avoid this next one.

I hate seizures.