I've been waiting for this day for quite some time, but just as much as I was anticipating it I've been dreading it too. This is new territory for us. We've NEVER been seizure free for this long. So much excitement for the progress he is making. Without seizures Jayen has been able to grow and make tremendous progress. The fear of the next seizure is ALWAYS there, but it lessens with each passing day. I don't wake up from sleep and immediately run to his room to watch him wake. I don't stare at him without blinking for the first 20 minutes he is awake waiting for him to start rolling his eyes and slowly falling to the floor. I don't carry around his rescue medication waiting to pop the top off and insert where no man wants something inserted! Although I should keep it closer than I have been, I don't worry if we are late and I don't have one with me. I don't hover and protect him the same as I did previously. I let him run, fall, climb, jump and wrestle. I let him LIVE and be the kid he was meant to be.
The dread and fear comes from the progress. While we are making so much progress we are now to the point where we get to start weaning medications. That is scary. Extremely scary! Part of me knows that means I have to be on high alert again and I'm not ready for it. The last time we were a year seizure free and weaning meds we had to quickly bring them back and ended with brain surgery. Will this change start things over again? Will this bring on seizures again? Or will this help the fog that he is in? Will this give a little more light to the boy he is supposed to be?
We met with Dr. Jarrar and talked a little about the mood swings we are seeing and the attention issues. She ok'd all the medications Dr. Melmed/Dr. Jessani suggested but also wanted to increase his Lamictal slightly since it is a mood stabilizer. I like this idea! We will start weaning the gabapentin by one pill weekly until completely off. If things are going well we will start taking away another medication after that.
I know I will constantly live in fear of when the next seizure will strike. I will never be able to completely let my guard down. My son with always have epilepsy, but we are taking control of it and not allowing it to control our lives.
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