Saturday, March 16, 2013

Interview with L

L had a little seizure this morning.  Not too bad, but once again, as it was starting, we could see he was more concerned about losing control of his bladder than the seizure itself.  And since fear and frustration are both triggers, I think his anxiety about wetting is actually triggering them now.  He cries about something or other, freaks out thinking he is going to pee, and then triggers the seizure.  I think that also might explain why he's had so many more recently.

We don't scold him about the incontinence (obviously) since it is not his fault.  Every time, we reassure him that it isn't his fault and change his clothes without making a big deal of things.  I'm also making the conscious effort not to use the word accidents.  He isn't having accidents, he's dealing with the effects of a seizure.  Maybe it's a silly distinction, but I think it may be important. At least to him.

Unfortunately, I am afraid he is picking up on my own stress about it- honestly it worries me more than the seizures, when I think of him going to school.  You'd have to be a low-life to make fun of someone for having a seizure- but wetting?  That's prime elementary school teasing material. 

Anyway, after he came around and was settling down, I asked him a few questions about what seizures are like.   It's nice that he's verbal enough to be able to explain things a little now.

Me: Does it hurt when you have a seizure?
L: Nope! (Huge smile!  I'm amazed how quickly he rebounds).
Me: What does a seizure feel like?
L: It's like <squinches up face and makes a pitiful, very puny-sounding baby cry sound>

Me: What feelings do to have when you have a seizure?
L: Sad.  And scared.

Me: Can you hear me talking to you when you're having a seizure?
L: It's <same face and puny sound as before.>  I can't.

Me:  If your friend had a seizure, what would you do?
L:  I'd say, "I'm here, I'm here," lots of times to her.

No more questions after that last tear-jerker answer. 


  1. This is fascinating! I love that he can talk about what it's like from the inside. "I'm here, I'm here." What a peach.

  2. I'm glad he could tell you what he feels like :D
    He's such a sweet boy :) That last answer couldn't have been better.

    1. I know it. It's a relief that he can tell us a little about it now.

  3. Okay, that last one with his sweet picture made me tear up.

    That totally makes sense about the anxiety of wetting himself actually being a seizure trigger. You are SO smart to have put that together and so wise to make the distinction between an "accident" and the effect of a seizure.

    I hope this phase of more frequent seizures stops soon. :( --Lisa

    1. I hope so, too. :) I don't know how to curb the anxiety about it. He's not anxious in general, but he has a hang up about this.

  4. I'm sorry you guys are struggling more lately, Robin. His answers had me tearing up.

  5. OH.MY.GOD. that adorable little face. I just want to give him a huge hug! He is such a sweetie! Poor guy! It would be so awful to have to worry about seizures AND wetting yourself!

    1. I know, poor guy. He really is resilient and doesn't let it get him down.