I had started writing this post on Friday, May 17, out of anger and frustration. You see, on Monday, May 13, my son had his annual overnight EEG. On Tuesday morning, prior to our departure, we were told that the overnight readings actually looked better than in the past, and there was a decrease in seizure activity. There was a wave of relief that washed over me. Maybe we're finally starting to see the light at the end of the tunnel, I though. Maybe we would get to the point where Parker no longer needed to be on medication. Then Friday came, and he has a seizure... a bad one. And the relief and happiness I had felt that entire week, thinking we had turned a corner, came to an abrupt halt.
I am finishing this post now because not that long ago, I saw on Facebook that a friend's son has been seizure-free for over a year. And while I am so incredibly happy that they reached this milestone, I can't help but feel a tiny pang of jealousy because we still aren't there yet. It has been seven years since Parker was diagnosed with focal epilepsy and initially, we were told he would grow out of it. Unfortunately that hasn't happened and we still don't have enough answers.
I haven't shared much about Parker's journey with epilepsy, mostly because I am a fairly private person and I don't like to divulge too much of my personal life. He hadn't had a seizure since his episode in May ... until October 26, and now again this morning, November 15. And they are becoming more severe. I will say that we are lucky in the sense that these are not full, tonic-clonic seizures (he has only had one of those and that was instigated during a three-day overnight stay at the hospital - and it was terrifying), but his seizure disorder, which we're now being told that it could be benign rolandic epilepsy, could cause a tonic-clonic episode.
Parker was initially diagnosed with focal or partial simple seizures when he was three-years-old, almost four. At first, it presented as a twitch in his right hand and now, it is pretty much his whole upper body with the majority of the seizure occurring on his right side. He cannot communicate and his breathing is fast and labored to the point where I feel like he is struggling so hard to get air. Over the last seven years, Parker has had multiple EEGs, PET scans, and MRIs to try to determine the root cause of his epilepsy disorder.
Since we've relocated to another state, we have a new doctor, and as I mentioned, are being told that this could be benign rolandic epilepsy, which is something that our previous doctor never mentioned. With our new doctor comes additional tests like EEGs, MRIs, bloodwork and genetic testing. What we were told previously is that he would grow out of this. I'm hopeful that we'll finally be able to get to the bottom of this and maybe have a different course of action when it comes to his medication. For now, it's ensuring his medicine is taken consistently and avoiding seizure triggers such as lack of sleep. It's also reassuring that even though there's a stigma associated with the word "disorder," there is nothing wrong with who he is and he's going to be OK.
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