I sat here staring at the blinking cursor for several minutes, realizing that even after a nap I am having a difficult time processing all of this. I barely slept last night as I kept vigil over C’s bedside. Every time he spasmed or twitched, I pressed that little button that they told me to press. I was nervous about going to sleep and missing anything. C’s pediatric neurologist came in this morning and gave us the report: it was an abnormal EEG without seizures.
He does not have seizures. We caught a staring episode in which he was unresponsive for a few seconds. We caught spasms in the middle of the night. We caught the twitching in his sleep. None of it is seizure-related.
At this point, we do not know what the staring is except that it is not seizure activity.
The spasms and twitches are myoclonus, a benign muscle movement during sleep. Have you ever experienced falling asleep and being startled awake by a muscle movement, and perhaps a feeling of falling? That is what C experiences throughout the night during arousals and falling asleep. The only treatment for this is valium. Myoclonus is not harmful. We will not be treating this.
C has abnormal brain activity in the central and mid-right portions of his brain. These abnormalities are independent of one another and occur during sleep and awake hours. His abnormal spikes in brain activity are brief, whereas seizure-related spikes require at least 10 spikes in a certain period of time.
We need to investigate this abnormal brain activity further. On Monday, scheduling staff from the hospital will be calling to schedule an MRI. He will be sedated during the MRI and, thankfully, will be on the pediatric floor that he was in during his hospital stay. It will be nice that they already “know” him!
During the MRI, they will be looking for structural abnormalities in C’s brain. If there are no structural abnormalities, then it is possible that he will outgrow the abnormal brain activity in those parts of his brain. If there are structural abnormalities, then he will not outgrow his abnormal brain activity.
Low Threshold for Seizure Activity
Every person has a threshold for seizure activity. Put enough stress on the body and the brain, then it is possible for seizures to occur. C’s threshold is very low. This concerns the neurologist and will require a decision from us. We have two treatment options.
One: have Diazepam on hand. In the event that C is seizing, we would administer this medication rectally to stop the seizure. This requires us to be vigilant in monitoring him. The upside to Diazepam is that he would not need to take medication daily. The downside is that his episodes have occurred during sleep. I’m unsure if I could handle this without driving myself crazy and being up all night, every night.
Two: we provide him with a daily seizure medication to raise his threshold for seizure activity. We can either use Keppra or Oxcarbazepine. With Keppra, he may have a side effect of irritability and aggression. That’s right – that is already a problem for him! I can immediately rule out Keppra simply for that reason. Oxcarbazepine is an option with side effects of sleepiness and, in 2.5% of patients, low sodium levels. His electrolyte levels would be monitored every six months.
We are taking the weekend to make a decision regarding treatment. I’m a little overwhelmed. I don’t want to put my baby on another daily medication. He already takes two GI medications! At the same time, would I be able to get any sleep with the other treatment method? There is so much to think about.
I am so grateful for all the support we receive from family, friends and lovely readers. I appreciate you so very much! If you have any experience or insight into these types of matters or treatments, I would love to hear about it in the comments. These are such weighty decisions when it comes to your child!