Epilepsy: Our New Normal

It takes a lot to rattle my bones. I’ve been through more than most parents have throughout my time as a mom. Not many parents I know can say they’ve been through, or have dealt with, even a small portion of the things I’ve been through. So, when something hits me like a ton of bricks and truly shakes me to my core, it’s usually got to be pretty significant, and it’s probably got something to do with one of my children.

This time, there’s no exception.

We received the diagnosis 2 days before he would turn 3 years old. Richi has Epilepsy.

I know I’ve posted about it in the past a time or two, that he had been undergoing EEG testing due to shakiness and a few strange movements. They were actually brought to my attention originally by his NICU clinic doctor, which he recently just graduated from a month ago. She told me it was bothersome and wanted him to be checked out. Well, when he was 6 months old we had an overnight EEG at the Children’s Hospital, and he was fine. They had said there was slow brain wave patterns, but that he was okay and to repeat in a year or two just for safety’s sake.

Fast forward 2.5 years later, and he had another EEG. This time, they would find he is having Myoclonic Seizures – and they are only happening during sleep. They also found that his brain is showing generalized electric discharges that are looking favorable for the development of focal and convulsive seizures. Needless to say, I was a complete mess hearing this.

I had been the one to make the call to the Neuro this time around. He was having some weird jumps in his sleep where he would fly up off of his bed, arms and legs out, or while sleeping and lying on me, he would fly up and his arms and legs would flail and his torso would go from side to side. Well, I’m glad I made the call. Because it was something.

Now, he’s on Trileptal 2x per day at a dose that’s working for him to a.) keep the seizures away b.)keep them from developing further.

He doesn’t fight me on the medicine, and a recent EEG showed the medicine is working as it’s supposed to. We have an MRI scheduled with sedation at the end of the month to see if anything else is going on. Prayers for that would be fabulous, because I’m scared. And I’m not afraid to admit that I’m sccared.

For now, we are learning everything we can about Epilepsy, Nocturnal Seizures (which are scary as heck, mind you) and Myoclonic Seizures. There’s nothing we can do to prevent them from getting worse besides giving him this medicine and praying.

Adjusting to our new normal hasn’t been easy by any means. But as I learn more, I become a bit more at ease with the diagnosis – and we are taking it one day at a time.





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