As we near then end of the Keppra weaning process, my anxiety mounts once again. I'm posting this with the hope that 5 minutes, 5 days, 5 years from now when a mom is looking for ANY sort of information about the weaning process, she may somehow come across this blog and know that someone, somewhere has "been there." It's so hard to find REAL information about seizures and the pain they cause because everything you read on medical sites is so sterile. It doesn't give you any idea of the physical and emotional toll that living with seizures can present.
I think the most difficult thing about seizures is that they are so unpredictable. Obviously the first one a person has is not going to be expected, but even a repeat episode can come with little to no warning. It's such an "out of control" feeling. I have never felt more helpless as when my son's body was jerking uncontrollably. Doctors and nurses were whirling around our heads, giving medications, giving orders, and saying what I would eventually learn is the mantra for seizures, "we just don't know." This initial shock to the system is also when one learns how to live with a constant knot in the pit of your stomach.
Unfortunately, it doesn't get easier from there because now you get to play the medication titration game. They try all kinds of different combinations and cocktails of medications, all with the express purpose of shutting the brain down. You then see the seizures start to subside, but you also see your child slip further and further away from you. So, you tell me what I'm supposed to hope for at that point. Do you hope that the meds work and the seizures stop only to realize that your child is now an unrecognizable shell of his former self? I thought that weaning would be less stressful because we'd be getting rid of the awful drugs that make him so sleepy and lethargic. Of course, it's not easier. In fact, I feel as anxious bringing him off of a medication as I did when we were adding them. The actual act of weaning makes him anxious and cranky and twitchy. He physically can't stop moving long enough to fall asleep even though he's exhausted. It breaks my heart every time he looks at me as if to say, "What is wrong with me? Why do I feel like this?" I'm his mom, his comfort, and I can't give him an answer. I can't take away his pain.
We have moved from three medications, phenobarbitol, topamax, and keppra down to just one. Tonight is the last dose of Keppra, and the knot in the pit of my stomach has returned full force. The questions play over and over in my mind: What if I'm doing the wrong thing? What if he actually needs this medication? What if we make it all the way to the end and he seizes again? What if we get rid of the thing that we think is holding him back only to find out that this was as far as he was ever going to go? What if the jerking movements continue even in the absence of the medication? He has made so much progress and we are grateful for every single thing he does all day long, but that doesn't mean that we stop hoping for him. We haven't stopped dreaming that one day we'll get to chase him through the park, or watch him get his first hit in tball.
Sometimes I feel like we are jumping out of an airplane, and we have a parachute, but it's only a picture of one. It's like we are able to see what safety and security look like, we just aren't allowed to actually have them. So, tonight, as I give the "last" dose of medication I will be both excited and terrified. And, parachute or not, we've got to make the jump.