It's been a wait 'n see type week, so new blog entries have suffered.
I've learned not to post over great days...because those typically don't last. Not to sound too depressing, but that's how it goes here. Up. Down. Up. Down.
There were a couple good days last week...seizures seemed low, Austin seemed energetic and alert.
Always to be followed by the days where I can't help but scrutinize every single aspect of his treatment. What's doing what (med-wise), is anything doing anything?
I put in an update to our epi clinic, telling them seizures are way up there. We were instructed to increase Klonopin again. Now he's getting two 0.125mg tabs twice a day. We also had to get drug levels of valproic acid and zonisamide checked...to see if that may be why the seizures have increased (maybe the levels are low). Haven't heard back yet (that was Friday).
I did notice something while at the lab though. Something extremely unsettling.
Austin didn't flinch. Not a peep at all when he got stuck. He just stared straight up.
What was up with that? The lady doing the blood draw just kept going on and on about what a good boy he was being.
But, that lack of reaction to a needle in his arm really bothered me. Not that I wanted to see him in pain. But, come on.
Am I overreacting? Should I just be relieved that I didn't have to see that pained look on his face?
I don't know. It just didn't seem normal to me. That he didn't even seem to notice anything.
Anyway, I haven't noticed much of an improvement since we increased last week. I'm not anticipating much either.
I'm honestly getting to the point where I want to get him off everything. See how he does minus three major AEDs. And just start over fresh. I'm just not convinced these meds are doing anything...exept making him clumsy and zombie-ish...
We see the epi again in July. Hopefully, by then, we will have given Klonopin it's fair trial and we can discuss new prospectives.
6 comments:
Austin got to the point he never flinched either. It stinks! Hope teh klonopin helps.
Oh this lil guy...Havent checked on his blog in awhile..:(!! I say you ask eto get him off of ONE...too many...no sparkle! I hope there is luck with klonpin..That is a very sleepy dru for madie...we are done with that one!
The 'reboot' scenario is one I fully understand you giving some thought to. It is hard to know where the disorders begin and the medication ends as far as affect on the overall condition of our kids.
That's a really hard call to make too, I don't envy it but can just as easily see us at that crossroads at some point too. But sometimes it makes total sense, especially with how far into this you guys have been.
Regarding pain. I've talked about this with one of my other IS Sisters, and we both noticed what a high pain tolerance our kids both had. We wondered if it was related somehow to the seizures, since pain is something that is felt through brain receptors, and all that.
I definitely wonder if there is any correlation.
Sorry things suck today.
Hey...I am so sorry that things are on a downswing right now...I can TOTALLY relate....I feel like I ALWAYS jinx Colby when I give a good report! How does that happen? It is ALWAYS up and down with us....Friday was a down day for us...Things have improved each day through today...What will Tuesday bring? Who knows?
As for taking all the Rx away...I hear about parents doing this and starting over, but I have to say, that would really scare me to death....I guess because C. also has the grand mals and they are SO horrible!!! And he has been on one sz. Rx or another for 16 years....
As for pain tolerance....Colby has ALWAYS had an extremely high level...Even BEFORE the Rx....But you can't go by him...You have to remember, he is severely mentally disabled as well...So I think that has alot to do with it for him....I'm like Ken, though...I just think all the meds AND extra brain activity can somehow shield some of the pain....Maybe that is a PLUS for our kids?
Hope tomorrow is a better day...
Cyndi
Sophie always had an extremely high pain tolerance. It amazed me. The Tuesday following major brain surgery on Friday, she was down to just getting regular tylenol and not even on a regular basis!!!
We went med free for about 4 months with Sophie. Her seizures were the same with or without the drugs. But after 4 months, I just felt like we needed to try something new so we started meds up again. It felt so free not to tied down to a schedule of giving meds but at the same time I felt like we were giving up. Like every situation in this journey, the emotions go from one extreme to the other.
I've been worried about you! And thought to email you several times...but then thought I should respect your need to alone time! *smile*
Maybe now would be a good time to think about the Keto Diet? You could wean him off everything...and just give the Diet a go? I am totally just throwing that out there...because honestly...it is a HUGE committment! And not one that I'm personally ready to take yet...so just take it for what it's worth...
Regarding pain...I guess I'm the only parent here with the opposite problem! I think Trevy thinks to himself that he puts up with seizures all day long...he ain't taking nothin' else! Even the smallest bump sends him to freak-out-ville...
But I would totally be concerned about Austin's lack of response to the pain. That IS NOT normal. And because he can't TELL you...you have to play PI. Maybe it is seizure related since so many other parents have similiar experiences. Buuuut...what if it's a sensory processing issue? I know I've read of other IS kiddos whose bodies didn't process pain. And that presents even more danger...because if he gets hurt & his brain isn't processing the pain...then he's not crying & warning you that something is wrong! I would do some research...and definately call your pedi! It'll make your heart feel better just knowing that you're exploring the whys...
Anyway...
I'm sorry hon. We definately live in and Up & DOWN world here in IS-ville...
...danielle
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