Our first full 24 hours off Depakene (valproic acid). I chose not to wean since the epi didn't think it was necessary.
I rarely get anxious or scared over weans. Actually, I'm usually just the opposite. Austin tends to do really well, so I'm always glad to see an ineffective med go. But, this one proved to be a little different. I've been watching and waiting for extra seizures. Nervous. Paranoid.
I even picked up the notebook again to reinstate the counting routine. Day three so far. I thought I should start counting again before the wean.
Sunday he had 15 drops and three clusters containing 24 seizures. Grand total for Sunday: 39
Yesterday (Monday) he had 19 drops and 5 clusters containing 33 seizures. Grand total: 52
So far today (Tuesday 8:30pm) he's had 22 drops and 3 clusters containing 51 seizures. We're at 73 right now.
I only gave him one of his 3 doses of the valproic acid yesterday and none today. So, it may look like there's a trend here with seizures going up. But, this has actually been very common for him. Low even. Sunday was VERY low. He had 4 clusters in one hour on Saturday. I didn't count them all, but I'd be willing to bet that in just that one hour, he had at least 75. So...this isn't unusual for him. Especially to vary so much from one day to the next.
It's impossible to think I've caught them all. There's no way. I would drive us both nuts by smothering him like I used to. Just to catch them all. So, I've been more relaxed this time around, and it's working it out so far.
Zonisamide is going to be a tough one. It will take us six weeks to complete the wean. He's currently taking six 50mg capsules daily. We will lower it by one capsule a week until he's done. I'm nervous about this one too. He's been taking this for over a year now. It was his first med (other than ACTH), and for months and months I was convinced it helped him tremendously. I would even completely freak if I was just a few minutes late in giving it to him. It's hard to believe he'll be off it soon. It's become the one constant since this all began. Our one and only familiar med during all these different trials. I'm relieved it will be so gradual.
(Leave it to me to get emotionally attached to a freakin' med...that is NOT working! I'm not kidding when I say I have issues with change!!)
Update: I started this post about 8:30pm, but wasn't able to finish it all at once. Austin's seizure count for the day ended in 94. Much higher than yesterday...But not above average. I'm trying to be patient...and not paranoid that's it has anything to do with the meds!!
5 comments:
Do the best you can, try and stay frosty and not sweat every single count. He's still within 'norms' for what you were expecting so that's good.
You're SO cute when you're rational...
...danielle
Hey, girl...I am thankful that, so far, things seem to be going pretty normally for Austin's wean...You seem like you are handling this well....Weans with us have never been hard....Maybe because they always go SO SLOW because of Colby's sensitivity to most meds....Like your regimin, we decreased Zon. little by little as well...By 50 mg. per week....I think one other reason our weans have gone well is because none of the drugs have been effective!
I am funny about the meds thing in that I have this "picture" in my mind of what pills I give when before I even empty that particular compartment for that particular dosage....So if we are making a change, I get kind of freaked when I see a DIFFERENT amount of pills!!! It makes me feel really strange! And I end up checking my wean schedule CONSTANTLY to make certain I am right! Now how crazy is THAT?
You hang in there....
Cyndi
Hi Holli,
I'm touched by your blog about your son, Austin. He is such a strong little boy!!
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Where are you and why haven't you been blogging? I get worried, I don't have your e-mail or anything and no way to find out how you guys are doing.
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