We (meaning Dr. Neuro in tandem with J & I) chose not to use a safety drug (like Topomax or Zonegran) after Trevy’s first course of ACTH. His seizures stopped so quickly…after just four injections. That was a good sign. And even though we wouldn’t speak the words for fear of jinxing…we were all filled with Hope. Of course his persistently abnormal EEG always kept us guessing if it was the right move.
Actually…Dr. Neuro recently told me she always regretted not extending Trevor’s ACTH trial the first time. To see if perhaps his EEG would clear completely.
She’s not the only one second guessing. Because of course I wonder now if it would have made a difference. Adding a safety net. Maybe Trevy’s seizures would have stayed in remission? But at the time…the side effects involved with the drugs felt heavier. And I didn’t want to contribute to Trevy’s developmental challenges. Every drug comes with the risk of inhibiting that very area.
So we opted out.
Until we were shoved back into the world of AEDs. About two months ago.
It struck me today as I was watching Bristel & Trev playing together. She was bossing. He was tossing. And it hit my heart like a ton of bricks. How happy Trevy is. I didn’t realize just how much of his personality was stolen by ACTH. But now…two weeks from the last injection…Trevor is a totally different kid. Cranky & Clingy have morphed into Happy & Clappy. In spite of 40+ seizures daily…not that I’m counting mind you!
He’s not just happy either. He’s also making developmental strides! Consistently babbling for the first time ever! And mimicking sounds. New sounds! It’s been amazing. And the truth is…he is happier & more there than he’s ever been. It’s like the fog has lifted.
All those abnormal-EEG months I thought I was doing the right thing by not using a safety med. I was so afraid to rock the developmental boat.
Only to be here today. With Trevy almost maxing out his Zonegran dosage. And yet doing so good. It makes me wonder if the Zonegran is at least dulling enough of the epileptiform activity to allow the fog to part just enough for Trevy to gain new skills? Which in turn makes me wonder where he’d be today if we had chosen to use a safety?
But life is not like those “choose your own ending” books that I loved as a girl. We do our best to make the right choices. And then continue to live. And besides…I don’t think anyone can really know for sure. Maybe this sudden happy & forward spell is just a fluke? Maybe he would have hit a developmental growth spurt anyway? Maybe the fog will fall again?
But it’s enough of something…to make me feel like this is one time I won’t look back on & wish I could re-choose.
(I always feel inclined to add a filter to my thoughts. Probably because I’ve randomly received criticism. But at any rate…this post is in no way an attempt to persuade any parent to use an AED. As always…this is simply my journey. As told by me. Filtered through my heart’s experience. And again…as always…I encourage everyone to follow their own.)