Six months seizure free!

Yesterday marked six months of no seizures. I really didn't know if I was ever going to be able to say that. I'm so happy the seizures are a (not quite distant yet) memory. 

As I sit here today I can tell you one thing, six months has not put me at ease, in fact it has done the opposite. Every day, I wait for them to return. I watch Karsen like a hawk, waiting to see the next twitch, spasms, or worse something new. Unfortunately the chances of Karsen staying seizure free for life is very unlikely. When you've had IS, they typically return in a different form. The good part? They don't return as IS. In the past six months I have poured myself into research even more than before. I want to be prepared. I want to know what drug is next, what would be the best, what has the least side effects. You can never be 100% prepared for seizures. Regardless of the type, they are scary. No one wants to see their child 'shut off' for a few minutes, or in Karsen's case his IS would be for 20 minutes sometimes. I recently found out from a fellow hemi mom (who's son had IS too), her son gets routine EEG's to make sure the IS hasn't returned. After talking to her for a few minutes my wheels started turning. How did we get from 'If this drug doesn't work then we need to look at a hemispherectomy as the next step' to 'We'll see you in June'. For those of you that don't know what a hemispherectomy is, it's where they would take out the half of his brain that is causing the seizures. Crazy, right? What's even more crazy to me is that kinds can function with just one half a brain and be incredibly bright and on it. I was told Karsen's EEG's will never come back normal and have never been normal. Which is what puts him at high risk for other seizures. So, why are we going so long with out checking? 

I wish we could see a doctor who is a stroke/epileptic specialist. I'm sure those are even harder to find than a neurologist. I'm strongly considering switching neurologists. It would be nice to have one closer and one that I don't have to work through the NP to get to her. *sigh* I can't just sit here and complain though. Karsen's current neuro has been great. She always takes her time when we are there. I think I am just mostly unhappy with the staff there. When we couldn't make the appointment earlier this month, we were told our rescheduled appointment was made for in June. What?! Ok, so maybe if we get in with a different neuro we could actually get seen sooner. It makes me feel uneasy to go that long with out Karsen getting another EEG to be safe. Again, I'm probably being paranoid, but wouldn't you? 

We've been doing so good. Karsen has been surprising us all with all of his accomplishments. I just don't want to go back there.You know, the ugly place with seizures and meds that don't let you sleep, the place where you cry in public because he's been spasming for over 10 minutes and you just want it to stop. So, instead I'm here; the place where I research, and sleep with one eye open at all times. This place is much better than the first, but I still have to take it one day at a time. 

So, yes, six months seizure free. Will it always be that way? You can probably count on it not, but I think it's safe to say he is out of the IS radar for good. Woo hoo! (~insert happy dance here~)

One of their favorite things to do in the car (besides ripping toys out of each others hands and making me go nuts). Every time I think I'm going to move their carseats appart they do this. How can I move them when they do this????