But you’ll fight and you’ll make it through

Here comes a long overdue update. I’ve sat down to update this countless times and written and rewritten this in my head so many times but I haven’t been able to make myself do it. Some of you know that I have generalized anxiety disorder and panic attacks and some of you are just finding that out now. I am a huge advocate of mental health awareness and an open book so I’m very candid about my own journey to figuring out how to navigate my anxiety and panic disorder. I like to think I put the fun in dysfunction. I had those well before Max’s Epilepsy came to the party. Now I’ve added PTSD to the mix, compliments of the unpredictability of the seizures and how hard our journey has been. We’ve had a lot of trauma this past year. Max’s unexpected emergency room admission and that resulting week long stay really hit me hard. Up until then, I felt like we had navigated the worst of it and that whole experience definitely proved otherwise. I am used to knowing our worst and knowing what to do. Sidenote: I am clutch in a crisis!  It also occurred at a time when we were in a tiny honeymoon period of being more controlled seizure wise than we’d ever been. 

We knew to expect the honeymoon period after surgery to place Max’s RNS, the team had prepped us for that. The rest was a definite plot twist for everybody. So with our typical approach of looking for the bright spots even in the worst of situations, some good came from this. Max was in the hospital for the most consecutive seizures he’s ever had. The good news about that is they were able to capture all of those seizures really well and use them to directly program his RNS with the seizure patterns. So then they use that data to tell the RNS to recognize those particular patterns as seizures and to interrupt them. Max was able to have his RNS turned from just learning mode to learning and interrupting because of those clusters. We have had another appointment since then and been able to have more adjustments made to his RNS. We can see the RNS working already which is amazing! Max will start a seizure and you can see it stop. It is decreasing the strength or duration of some of his seizures. The fact that he’s still having seizures doesn’t mean that the surgery wasn’t a success.  I think I said before that we’re playing the long game with Max’s seizures. There are no quick fixes when it comes to intractable epilepsy. It took us a LONG time to get here and a ton of qualifying testing to ensure this was our best approach. We are going to experience other bumps along the road too.  Max has been incredibly sensitive to side effects of many of the AEDs (Anti Epilepsy Drugs) that we’ve trialed . The medications used to prevent seizures are heavy hitters and come with scary side effects often affecting moods and thoughts. For Max, those side effects seem to compound while the seizure stopping parts of the drugs don’t. Early on in our journey, I asked one of our nurses if that was the trade off, that we treat the seizures and lose him. She said no, that the goal is to treat the seizures and keep him as close to pre- epilepsy diagnosis Max as possible. That has been the bar that I set everything by since. We have failed many medications whether it’s because they don’t stop seizures, make them worse, or completely alter Max’s moods, emotions, and personality. I’ve learned how to make myself a polite but firm and persistent pain in the ass and won’t compromise on Max’s quality of life or lose him to this. 

A few weeks ago Max seemed like he was getting very moody. He was getting upset over things that wouldn’t typically upset him, and experiencing BIG mood swings. He was pretty agitated and struggling with focus and just not himself. It was heartbreaking because he knew he wasn’t himself. My gut said we were seeing side effects from a medicine level being too high. I contacted the team. They know if I am rapid fire texting that something isn’t right. We televisted with his Epileptologist and let her know what we were seeing and I told her which medication I thought it was and why. She agreed and  decided to wean him down and see how that affected him. It was a pretty quick wean which generally means a spike in seizures. We immediately saw the beginnings of a  return of our regular Max. We had a follow up (the same one for our 2nd adjustment of the RNS) and they are happy with what they’re seeing. We’re hoping to continue seeing success on the RNS and possibly continue to wean off this medication. 

From the outside, this may not seem like progress but for us, this is huge! There are people who I’ve spoken to who have had to wait much longer to see the improvements we’re seeing. 

Implantation of the RNS was the start of our next marathon but a different kind of marathon for us. This time we have more hope and possibilities than we had before. It’s going to take some time to get there but we’re on our way.