Wednesday, September 10, 2014

Best Neurologist Phone call EVER

If you have been following me for a while, you know that my Naters has epilepsy. I don't really dwell on it much, because it doesn't really impact our lives too much.  The only big things that aren't really big are: He can't ride the bus or hang out at friends houses without either Eric or myself.  Technically he COULD go to other kids houses without us, but saying to a parent that doesn't really know us "Hey there. Nate has emergency seizure meds. If he has one that lasts over 5 minutes you need to squirt this in his butt." isn't the greatest way to make new friends

His first seizure was almost 3 years ago on October 8th, 2011.  It was the day before mine and Eric's anniversary and I was set up at the farmers market selling my stuff when my phone rings.  This was the call.  (The best I can remember. It was REALLY awkward)

Me: Hello?
Guy: Hey.  Um.  Your son is having a seizure on the soccer field.
Me:  Say what, now?
Guy: Yeah, um.  Your son is having a seizure and your husband is with him. The ambulance is on it's way.  
Me:  Ummm...ok. I am coming. 
Guy: Your husband is going to ride over there in the ambulance.  We'll keep your other kids until you get here.

Commence total panic and throwing everything into the car.  I literally shoved everything in the car. In the craft world, the other vendors have your back. EVERYONE stopped what they were doing and helped...even the little old 80 year old ladies.

Next month....Thanksgiving...another seizure.

Nate has been on meds for about 3 years now. Last week he had a 24 hour EEG.  Thankfully this one was at home.  The first long one he had we were stuck in the hospital all day.  Try keeping a 3 year old sitting on a bed all day long.

I JUST received a phone call. His EEG was clean. No abnormal discharges. THIS IS HUGE, GUYS.  I was always under the impression that the meds kept the discharges from happening.  I just found out that the abnormal discharges still occur. It just keeps the discharges from turning into a seizure.

I have been SUPER scared about taking him off meds. We actually talked about it in January and I have been terrified.  Now though, I think I am ready.  Having a clean EEG is AMAZING.  There is still a 50% chance that he will have a seizure when coming off the meds.  I think at this point with a clean EEG, I am comfortable enough to do this.  We are going to start in December.  

The weaning off process will take about 2 months, then the first 6 months he will have the highest likelihood of having a seizure. After that, the chance drops significantly. If we make it two years without a seizure after being fully off meds we get to say "So long!"to epilepsy!  That is one relationship I will be HAPPY to see dissolve!

Seriously. This is the greatest day.   Here is a weird pic of Nate for you.

2 comments:

  1. Yay!! That is excellent news! So excited for you all.

    ReplyDelete
    Replies
    1. Thanks! It is terrifying and exciting all in one!

      Delete