Let’s Talk About EEGs

 

This is the face of a 5 year-old stinker who, the moment his Mama finally fell asleep around 4am during his 24-hour EEG, expertly removed his gauze cap and several of his EEG leads and proceeded to whoop and holler as he twirled it above his head, lasso-style. I wasn’t sure if I should laugh at his crazy antics or cry over the fact that this likely split-second movement could result in a second night at the hospital. I chose the former, threw on my mask, and ran out into the hallway to see if the on-duty nurses could help me re-wrap his head to preserve whichever leads were still remaining. We laughed as they tried to recreate the wrap while Solly batted his eyes at me and said, “Hiiii Mama.”

Let me back up a second.

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Growing Past Panic Mode

Trigger warning: if you can’t stomach conversations about vomit, skip this post and wait for the next one!

A couple of weeks ago, I hit the panic button. It was the middle of the night, I woke up with a start. It took a few seconds to register, but I definitely heard something, someone was coughing.

At first, I thought it was Bea trying to wake me up for her typical nighttime feeding, but I quickly realized it was something more serious than that. Solly was coughing, choking, upstairs in his bedroom. I sprinted upstairs to find him vomiting and choking in his crib. Normally, he’d be able to roll over and clear his airways, but ever since he had SPML surgery, he’d been sleeping in a fairly heavy duty hip support that is difficult to roll in. I sat him up and patted his back until he stopped throwing up and then took him downstairs to get cleaned up.

I thought he seemed somewhat disoriented and was jerkily moving his arms and legs. I jumped to the worst-case conclusion: seizure. To our knowledge, Solly has not had a seizure since he was in the NICU, and even while he was there, I never witnessed him having one. However, from the nurse’s notes, I knew that his seizures presented with jerking movements in his right arm and leg, and I’d also read from other parents that their children often vomited after having a seizure. We’ve kept him on Keppra, an anti-seizure medication, out of precaution since his EEG’s had almost always been abnormal. An EEG just three weeks prior to this evening showed an improvement in his brain activity, so it seemed like we were moving in the right direction to begin thinking about weaning him off of Keppra. However, at this point, it seemed that these hopes had gone down the drain.

We gave Solly his rescue seizure meds and a quick bath and, because it was 1 a.m. at this point and there would be no one at his neurologist’s clinic to give advice, I put Solly in the car and took him to the E.R. in case he had another seizure.

Once I got him to the E.R., I had my regular Solly back. Several doctors examined him and couldn’t find a reason why he would have a breakthrough seizure, other than possibly being fatigued from our recent vacation. Typically after a seizure, children will be very tired and sleep for quite a while. Solly was awake, playing with me in the E.R., and very much the happy-go-lucky little kid that he is day in and day out. It didn’t SEEM like he had a seizure. The doctors felt that we could go home, increase his dose of Keppra as a precaution, and follow up with his neurologist the next day if needed.

In the days following our E.R. visit, I couldn’t quite wrap my head around the event. If it was a seizure, was it just a random event? Did we need to increase his medications and follow up with his neurologist? Solly has some extra sensory needs and often needs to chew on things as a result. I considered another scenario and thought maybe he woke up in the middle of the night and started putting his hands in his mouth, accidentally making himself vomit. But even that explanation didn’t sit well with me.

Six days later, Solly threw up again. Twice. This time, it was in the evening, my parents were with us, and we all witnessed it. Nothing made him throw up. He didn’t have a fever, he wasn’t sick, he didn’t have a seizure and he didn’t have his hands in his mouth. He just threw up.

And then it hit me. In the days leading up to Solly’s nighttime event, he’d been eating more. Like, a lot more. What if these vomiting episodes had to do with motility?

Coincidentally, just days later, we had our first appointment with a new feeding therapist. She confirmed it: when anyone goes through a major growth spurt, sometimes esophageal muscles have trouble keeping up and coordinating. This is especially the case with kiddos that have CP. Some vomiting is common with a growth spurt.

So, there you have it. Our Solly is finally going through a major growth spurt! In the last week, we’ve even had to buy him bigger pants and pajamas. Eating and growing has always been a challenge for us, so I couldn’t be more pleased. I certainly hope this uptick in eating continues! And for that panic mode? I’m sure that’s not the last time I’ll hit the panic button with Solly. But for now, I can rest easier and try sleeping without always keeping one eye on the baby monitor.

 

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Our big kid, recently playing at the park.