Where do I begin???
As if the anticipation and prep work weren't enough for this week (and the therapy in half an hour followed by a trip to the lab), I'm frazzled beyond words right now.
Last night I lost it. Lost my patience in med trialing/weaning, lost my cool exterior, lost my friggin' mind!!
After a loooong nap (which I would expect to see a few clusters), Austin proceeded to have nearly 8 clusters in a span of six hours. One right after another. Between 8 & 10 pm he had four. What gives?
What's more...that smiley, glowing boy is gradually fading again. Sometimes turning away from me and avoiding us. Walking around aimlessly. Falling again. Gnawing on his fist again. Irritated. Whiny.
Let me add even more to that. The real zinger.
I have absolutely NO clue what the heck is going on!!! Or even what kinds of seizures he's having for that matter!
I've been exploring the possibility that Austin may not even be having atonics. At least not right now. Long and confusing story...but, bottom line, he's jerking his arm up with the seizures I've always thought to be atonics. Atonics, by description of our epi, should not include a movement like this. It looks to me like a spasm (myoclonic). Maybe they were all along, just not with strong intensity?
I feel like we're back where we were exactly a year ago. Only with 100 more seizures a day. August 13, 2008. The last injection of ACTH. Exactly three months into this hell. Times were so confusing then, but slightly looking up and I swore I was seeing the light at the end of the previously pitch dark tunnel. The ACTH wean was finally over and Austin was having less than 20 seizures a day. On maybe 50mg of Zonegran (but with intentions of going up). Exactly what he's on now (with the intention of going down). Only now it's accompanied by two others -Felbatol and Klonopin. Those were the best seizure days he's had since this all began. And the seizures were not occurring in clusters. I was just starting to suspect that they were atonics. Today? I'm suspecting that they may not be. Ironic, isn't it?
I find it so incredibly strange that we are in this position today.
Plus, that old gut feeling is coming back to haunt me. The one I had when the discussion of adding Felbatol arose. Somehow I knew we would find ourselves questioning everything again.
And, here we are. Clueless. Was Zonegran really helping? Is Felbatol making it worse? Are the hyps back? Are we losing him to this Felbatol? The one that's supposed to be making our lives better?
I only hope I am able to form actual, complete & coherent sentences when we get our call back. At least enough to get my point across!
I'll try to update if I get the chance before we leave...providing I hear something back before then!
10 comments:
Holli- I am so sorry things are bad again. Seems like a dreaded EEG might be in order.
Or maybe it's all a fluke and today will be better.
oh man! i'm so sorry you are going through all of this:(
((((hugs))))
Is it just me, or does it seem like this week is shit across the board for nearly everyone in our little 'family'?
Some bad mojo floating around out there right now, there really is.
ok ok so MAYBE the meds are not the meds for Austin..EEG is in order! maybe they can determind a "type" of seizure... It took a 7 hour EEG to determind that madie was having Tonic Clonics....Soooo
I hate hearing about all this...I know how it feels and I know that "blank" child who just seizes and sleeps... I ALSO know how amazing it is to see the "awakening" the feeling better the giggles the sleep improvements...
Things WILL get better!! I see many things that Austin does that I wish my madie did! that darn greener grass..
(((((hugs)))))
7 hour eeg for madie next month! going strong!!
Ugh...I don't know what to say. My heart goes out to you. It is so hard when things just start piling up. I know you probably already know this but...Felbatol was no good for Sophie. Right before surgery, I couldn't figure out if Sophie was regressing or if it was the Banzel or Felbatol. It SUCKS because you just never know what is causing what. I hope things turn around and you have a wonderful weekend.
This is the first time I have wandered over to your blog. I'm so sorry this is happening. Sometimes as our little ones put on weight they need a little dosage adjustment. I hope it's just that. We had some seizure worries recently and what helped get the attention of the neuro was popping a video on utube and sending it to her. It was just done with a camera phone but it really helped show what was going on and we got an EEG two days later. I am hoping for a fast turnabout. The needless suffering of our children having seizures is heart breaking. Take care.
The only nugget of hope I can offer...is that as we've come off of Banzel we've had more "Trevor" again.
I would think it's med connected.
But of course...the only way to know for sure is to wean. And wait. And see.
Which sucks. Like SO much of what we have to watch our little guys go through.
I'm sorry sweetie. I hope Dr. C has some good news!
...danielle
I am so sorry it is such a struggle right now. We are right there with you....seizures on the increase....not sure why. Is anything working? Ugh.
I just wanted to let you know we've been through the same experience, where what I had always thought were atonic head drops suddenly seemed to be spasms. They started to include raising arms and a kick of the legs. I wastotally dumbfounded. I now call them single spasms. I don't know what they really are. That is what used to make Maddie fall but eventually got stronger so that they kind of propel her backwards. And suddenly this week, even though we are seeing clusters of tons of myoclonics and her single spasms, now we are seeing clusters of head drops just after she wakes up. I am totally at a loss. I guess it's good we are going to Detroit in 9 days. Maybe they can make some sense of it all for me.
It all sucks, and it is so much worse when you feel like you can't tell what is or isn't working with the meds. I hope that it gets better for Austin soon! Maybe getting him out of the house for the weekend will be the change in scenery you all need. I hope so.
Holli...(For some reason, I haven't been able to get on your site in awhile...I can get on some and not on others...Don't think it is Blogger...think it is just my ancient computer!)
Anyway...I am so sorry you are on a downswing right now...How do we EVER know for sure why the seizures increase or decrease or look different or last longer or whatever???
It doesn't seem like our kids can be "normal" at ANYTHING!!! Not even seizures!!! Colby had a very long "drop" tonight at supper (with a big bite of chicken strip in his mouth!)...This was more unusual for him because it lasted so long...My mom was here, and I just looked at her as he seized and said, in a very ugly smartass tone, "I LOVE my life!!!"....I shouldn't have said it...All it did was make my mom feel bad for me, I am sure...Which made ME feel guilty!!!
But we just never know from one day to the next...or hour to hour....what our children OR our lives are going to be like!
Just hang in there...I wish I could wave a magic wand for ALL of us!!!
Cyndi
Thanks everyone...I STILL don't know what's going on. Here it is 1pm on Monday, and I have yet to get clear instructions from the epi. I ended up decreasing his Felbatol back to the previous dosage and he definitely improved. I'm still torn between going back up or decreasing it again. Some type of communication from his doctor would surely be nice!!
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