We’ve had some pretty….crappy feeling? discussions with Neuro this week and the expectation will now be that given his injury and his seizure history with the injury, he will have seizures.
Our goal and expectation until now has always been to get full control, and that’s now shifted. They will make changes to meds if he starts consistently having the clonic-tonic (the shaking ones you always see on TV) or a significant increase in the ones he’s currently having. The hope is still as few as possible, or none, but there won’t be an assessment to see if we need to change things every time he has one.
If he’s sick or experiencing things that are known to lower his threshold, the goal will be to get him through that right there and then and then keep going with the plan as long as he comes back to his baseline. She said they may and will probably change their presentation (which we’ve seen already) and he will have highs and lows with his threshold and how often he’s having them. We’ll adjust meds with growth spurts but otherwise, the next step would be to add yet another medication which we don’t want unless we absolutely have to, as he’s already on so many and they each have their own side effects – and it may not even work.
So now we’re left in this crappy feeling place where we shift his baseline and expectations/realistic goals. He will have seizures. He’ll have good days, weeks, maybe months, and bad ones and unless things start to worsen significantly and/or it’s affecting his daily life too much, this is our reality and this is the treatment plan. I’m torn about it. I get it. He’s on so many meds, and the reality is, he had the stroke at birth, the encephalitis in December, and the genetic link. The odds aren’t in his favor. But this is my little kiddo. It breaks my heart every time seeing him struggle. Unfortunately, this reality is common for kids like him, but it sucks. There’s a couple of options we’re inquiring about but everything is a balancing act. How do I not give up hope that we may one day defeat this beast of this is the reality that’s in front of us right now?