Saturday, May 4, 2013

Recordkeeping

Three more for the records

Yesterday L fell out of a chair at a restaurant and hit the back of his head and had a seizure.

Today he had two RAS episodes, but neither developed into a full seizure.  One at the pool when he looked around and didn't see me (this seems to be his most frequent trigger these past few months) and one later at home because M crumpled up his puzzle.  Both times with help he was able to take a breath before the point of no return, but they "count" nonetheless.

I don't know if it even does any good to record them like this.   It's depressing.  But sometimes I look back and see patterns, sometimes I notice things.  We used to go several weeks between seizures, now it seems we have at least few every month. They come in clusters, two or three in a span of a few days, then a few weeks of reprieve.

At some point, hopefully, L will outgrow RAS.  But even then not really, because those who are no longer said to have RAS can still have an average of one episode a year, or more.  Some go years without a single event, only to have it come back again full strength as a pre-teen.  I was talking about that with one of my coworkers earlier this year, how in a sense it will always be there in the back of my mind, and I actually don't like how the name isn't really used after children reach elementary school aged, since they do still have them.

She didn't get it and asked why I 'needed' the name.  "If M wet the bed once a year, would you say he was a bed-wetter?  No, you'd call it a fluke and think nothing of it. When L gets to the point of having one a year, you have to stop."  Stop, what exactly?  Stop caring that my kid has seizures?  Not likely.  Stop trying to do what I can to reduce the likelihood. Why?  Can you imagine someone saying something like that to a parent of a child with epilepsy?  "Why do you feel the need to call your child epileptic?  He only has one seizure a year.  You need to stop this whole epilepsy thing."  Maybe RAS just needs more awareness.

6 comments:

  1. More awareness for sure.
    When people don't understand things, they seem to feel they have a license to say whatever pops into their heads and it can be the most rude things. I've had a person who liked me and was a "friend" say to my face (as if it was appropriate): "If Bobby has a reaction to peanuts he can just use his epipen. What's the big deal?" Um...well if he needs an epipen he's near death. Would it be okay if your kid was near death every so often and the thing that kept him from dying might not work or if it does it could raise his blood pressure so he might have a stroke. Is that okay with you? WTF?? Again, this was someone who wasn't even trying to be mean. She was just having a conversation with me. FFS.

    I totally understand what you mean about the name. Having a name to put on something helps you wrap your mind around it and organize a plan of action. You can research something with a name and explain it to others.

    I think you are very wise to keep records like you do. Sorry this has been a rough few days. --Lisa

    ReplyDelete
    Replies
    1. Same here, this gal is a friend and just didn't understand. Then again, she's not a parent and some things you have to experience to understand. Thank you for understanding. :)

      Delete
  2. I understand that keeping a record of this is depressing but I think it's very smart of you. And it is obviously helping since you are noticing patterns to I would say keep going and you will have a breakthrough.
    More awareness is exactly what people need. I hate people who dismiss these things or take them too lightly only because they don't have personal experience. I have a cousin who's child is diagnosed with ADHD. But people just call her naughty or spoiled, and I know it breaks her heart because she is really struggling.
    I will never understand how people can be so ignorant. It won't take much time to educate yourself on these things - all it takes is googling these days. Or if they don't have something nice to say, maybe they should just shut up and mind their own business.
    I'm so sorry that these RAS episodes are occurring so frequently.

    ReplyDelete
  3. Thank you Xae for your kind understanding. :)

    ReplyDelete
  4. I agree with Xae, it's really smart to record it. And I agree, that doesn't make any sense to stop calling it RAS just because he 'outgrows' it. So then he's supposed to explain "well, I used to have RAS but now I just sometimes have a seizure or wet the bed, which is related to the RAS but isn't technically called RAS" Yeah, because that makes sense....

    I'm so sorry you had so many seizures in a row. That would be so hard. I hope he's doing okay now.

    ReplyDelete
    Replies
    1. He ended up falling under the weather last night, which is always a trigger. He must've just been worn down and more susceptible the last few days.

      Oops, I should clarify. My friend was just using bedwetting as an example of something else that can happen with kids from time to time, like if your kid did that you wouldn't need a name for it. (But there isn't a tie I know if between RAS and bedwetting, except if they were having seizures in their sleep). But that's what bugged me about it, I think. Bedwetting IS a normal thing for kids from time to time, but having seizures isn't. It's apples and oranges.

      Delete