Monday, April 13, 2009

A Difficult Easter Weekend

The weekend was not really very good. There, I said it. Correction...the weekend was not very good for me. Carter had a pretty good time, doing Easter related stuff and playing with his cousins, and Bennett, when he was not sleeping or seizing, seemed to have a good day Saturday, though Sunday most of the day he was listless and a bit out of it, though he got very giggly and energized in the evening from around 7:30-10:00. But for the festivities something wasn't clicking for the little guy.

It was sad really, for me, standing outside watching kids search for Easter Eggs at my mother-in-law's house, and seeing Bennett not really running around as is his norm, and not really searching, and not really interested. He was just sort of being led around by Jennifer or Mandy to pick up plastic eggs filled with chocolaty goodness, none of which he can even have by the way, but he doesn't know what he's missing so that's no big deal.

Some people refer to Topamax as 'DOPE-amax', because of the zombie-like effects it can have in some people as it tries to work it's anti-epileptic magic. The problem is that I don't know how much of the slurring or stumbling or lack of energy at times to be related to the medication or to some kind of regression that often comes along with Infantile Spasms. So rather than stand there and enjoy the Easter Egg hunt, I find all I do is analyze, study, observe...and I can never find my way into the moment. Sucks.

Not to mention the fact that the seizure activity is not getting better, it is getting worse. Intensity level is steadily increasing, on its way I fear back to its pre-ACTH level, frequency of sezires during a cluster is increasing and frequency of clusters is increasing. Whether the increases in Topamax dosing that occur this week will have any effect are anybody's guess. We just don't know. Yeah, sure, based on my Friday update, there is a PLAN...but that doesn't really help me a lot in managing my emotions.

Guilt plays a factor too...I sometimes read other people's stories about their children on forums and realize that some children have it worse than mine does. Some parents have it worse than I do. Then I feel guilty, which then makes me angry because I can't feel guilty about feeling the way I do about my own son. Of course, some parents have cases better than mine, so that tends to balance it out I suppose.

Managed to finally grab my small camera and shoot Bennett having one of his clusters. I didn't tape the whole thing, there isn't any need to. I have oodles of his seizures on DVD using my larger digital camcorder. This was using my small digital camera which allows me to take snippet video and post, since I do not know how to take a small section out of a DVD and make an avi or mpg file out of it. I wanted to grab some footage for online so that some folks who had been asking about what it looks like can see.

This was taken yesterday. It's at the tail end only of a cluster of seizures, which I think was a cluster took around 11-12 minutes. (He had five clusters yesterday and I can't remember which one this was but if it matches to my notes then he is already on #30 or so when the video starts). These are about at an 85-90% of what type of intensity he can reach, and you can actually, through the course of the video, see them get faster and less severe, as it is starting to 'wind down'. In this cluster he is not really reacting a lot in between seizures. He can sometimes be VERY agitated and upset and other times he will be...no lie...giggling, smiling or clapping. Go figure THAT shit out...I dare you. (Though the laughing ones tend to have no arm movement and just head nods.)

Note that what I call a seizure is the period where he 'jolts' with his head and arms. They call that 'infantile spasms'. Sorry...but I think that is too soft a term...makes it seem so harmless, but it ain't. And if you have never seen IS in action, don't take this video as Gospel, cause it is different each time not just for Bennett, it is different for all kids. There are some videos on the net where they are MUCH worse than this and some where they are better. Point? They all seem to be a little different.



I think that's the biggest reason why I said my weekend was not very good. Weekends now kind of suck for me because Monday through Friday I see maybe one cluster a day, at night, after Bennett comes home from his Mee-Maw's house. Some days he does NOT have one at night, though with the ACTH drop-off the averages are favoring more per day and more per night too.

But on weekends? I get to sit there for every single FRAKKING one. Wears me down man. Just wears me down. Yesterday for example, by the time we even WENT to Jen's Mom's for the Easter shindig, he had already had two clusters with a count of seizures well over one hundred. Had a very mild cluster while over there with people around, something I call a Type C (in my seizure log) which is a minor head nod/some staring variety. Then another when I took him home, then another at night before bed.

I said something to Carter that was so horrible yesterday early evening. He had not napped, he was very whiny and fussy, and I was in one room doing my thing and he was in another doing his thing...I felt bad he was by himself and since Bennett was dozing I went in and started to help him pick up some toys and stuff and talk to him. He was really being a brat about some stuff, and I said 'Carter, sometimes I feel guilty for not spending enough time with you and then I come in here to do it and you act like this and I remember why I don't do it.' What kind of horrible, awful shit is that to say to your 4.5 year old? He doesn't really remember what I said, but I do...and I felt so horrible afterward I can't even begin to explain. I apologized to him about a half hour later and he didn't even remember what I said, which was good, but still...I need to control that shit, I just can't allow myself to say things like that to my kid, I don't care how frustrated I get.

But that's what this whole thing is doing to me...week after endless week...it is eating away at me and affecting every single aspect of every single day. Dammit...I was kind of hoping that writing this morning would be cathartic or therapeutic...I need to snap out of my funk. Oh well. Tomorrow is another day. Let's end on a happy note. Even though this weekend I saw a lot of what you just looked at above, check out this photo I took during this very same weekend.


He's still my bright, beautiful, happy boy...most of the time.


10 comments:

  1. I realize candy doesn't matter at all, but why can't Bennett have chocolate? Are there links between certain foods and seizures?

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  2. Actually in some kids, kids who are on a very strict Ketogenic diet in an attempt to control their seizure activity, the answer would be yes. Not that there is a link between seizures and foods, but if the Keto system is working for a child and they break from it the result can be a return of seizure activity. Though Keto diets are just like the meds when it comes to seizure control...works for some, not for others

    In Bennett's case it is just a matter of right now trying to deal with his weight...the ACTH treatments made his weight shoot up fast, and we are just keeping the real junky stuff away for a while to get his weight to normalize as he comes off the steroid.

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  3. Ken, I feel for you man. The video clip was heart-wrenching.

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  4. I have this urge to say something profound...inspirational...about how this is making you...me...our families...stronger. Better.

    But I got nuthin'. Cause today I happen to be in a funk too. Seizures suck.

    But at least we're not alone in it...right?!

    (((((hugs))))

    ...danielle

    ps. and our kids happen to be stinkin' adorable! That doesn't hurt either...*smile*

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  5. Hey old friend.
    I'm not sure where your strenght comes from...but you have it in spades! I just want this to pass for you all! Let this be a short nightmare with a long good ending.

    We should share stories about the stupid stuff we have said to our kids by the way...I've got some doosies.
    Richard

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  6. Okay...I started to leave a different comment but it was way too depressing. All I will say is that...it truly SUCKS to watch your child have seizures day after day after day and that I know how you feel. Especially the guilt thing.

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  7. This video certainly does help understand it a bit more. I was picturing something more violent with shaking ala what movies make them out to be. He almost looks like his body is rebooting itself. Having to deal with this on a constant basis has to be draining on both of you. Hopefully it gets better from here.

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  8. Rob:
    Yeah...I hear ya. Hard to watch. Imagine watching that when he has 65-70 of those seizure spasms over 15-20 minutes. Those are the worst, for us both.

    Chad:
    That's funny.

    Danielle:
    S'OK...MOST days I got nuthin too. Draining me like crazy this week.

    Richard:
    True, I'll probably say worse to him before he gets older...but I just hate that I even thought it up. Just cruel.

    Elaine:
    Thanks...I know how you feel too...it is just awful.

    Matt:
    Yeah, for anyone who hasn't seen an episode of Infantile Spasms I guess you'd imagine a grand mal type seizure, but seizures have many, many varieties, sadly. But a reboot is a good description, cause that is actually a term that I've heard doctors use.

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  9. Gosh I know it is so hard!! It totally sucks and is just unfair!! He is such a beautiful baby boy! God Bless, My Sweet Blessing

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