I adore my little guy and love him more than anything. He is the reason behind every single thing I do. I love exactly who he is and am so proud of everything he has accomplished. But some days with James are particularly hard, like yesterday.
James has been challenging from the beginning, really since pregnancy. He makes us work for it, and I’m good with that. He has pushed me to learn and grow in ways I wouldn’t have without him. We’re up for the challenge and face it head on every day. There is no other option. But if we have many more days like yesterday I truly don’t know how we’ll get through them.
James is smack in the middle of a side effect of Keppra described by some as “Keppra Rage.” James is taking Keppra to control his seizures, which it is doing beautifully. He began taking it just over a month ago. His previous med wasn’t working anymore and Keppra is his new neurologist’s preferred medication. It is the most effective seizure med with the fewest side effects, according to his doctor.
After a couple of weeks on Keppra James began to have more aggressive behavior and couldn’t focus as well. We talked with his doctor, who suggested we change his medication. Then James had some good days, and Keppra was controlling his seizures, so we stuck it out. Then he had some not so good days. We had an appointment with his neurologist, medication change (which happens over several weeks for those who haven’t been through a change of seizure meds before), and some really bad days. Yesterday was a really bad day. He is currently still on his full dose of Keppra while his new medication is slowly introduced, then Keppra will be slowly weaned. It will be 23 more days before James takes his final dose of Keppra. Twenty-three days, and yes, I am counting.
I hate this for James. I can’t imagine how bad he must feel inside, to be acting out the way he is. He’s a pretty roll-with-the-punches kind of guy most of the time. He puts up with a lot because he’s had to his entire life. I’ve never seen him like this. His mood changes in the blink of an eye, he hits and kicks all of us, hits himself in the face, bites his hand and fingers, screams at the top of his lungs, flails around on the floor, shaking his head back and forth. The little boy who loves books can’t sit to have a story read to him right now – he stands with his body in constant motion. He can’t focus for more than a couple of minutes, even on things he loves.
It takes all three of us to get through the bad days. Even though I know this isn’t him, it’s beyond frustrating after a few hours of trying to handle these behaviors. I have definitely not been Mom-of-the-Year on days like yesterday. I know others could handle it with much more grace and understanding. I’m just trying to survive. This is definitely not my strength. I’m so glad that Daddy and Grandma are there when I need a few minutes. It’s hard when none of the usual tricks work to calm him and almost nothing makes him happy. Challenging? Yes. Learning a lot? Yes. Wanting our sweet little boy back? YES!
Thank goodness not every day is like yesterday. And I’m truly thankful for Daddy and Grandma. Working together we’ll get through the next 23 days.