Skip to main content

Pharmaceutical Fallout

"Back to the hospital?! You're joking right?!"
I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure. 
To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino.
I'll tell you why:
So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands.
Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse.
It's true, one does not mess about with allergic reactions.
Day 1
Day 2 (rash got progressively angrier and abundant as the day went on after I took this pic)
Day 3 (no pic but rash looks a lot better)
He was seen by his neuro within the hour, and after some bullying and grilling from yours truly, the action plan was determined fairly quickly. I'm getting pretty cagey you guys, and after making Leo's doc list everything he knew about every med and side-effect out there, he agreed to MY plan. Ha! Seriously I'm not THAT kind of mom, you know, the kind that makes people run away screaming, but I'm not going to just nod and take every prescription without lots of thought and research. Plus I kinda happen to be a Leo expert. I have a PhD in Little Lion Man Studies.
My new plan is to quit the Trileptal cold turkey and add in a nightly dose of Onfi (clobazam) to kill the nightly battle in the trenches, which hopefully will also quiet the daylight sparking too. 
After stopping the med on Wednesday Leo has been up and down with the remaining allergy symptoms and perhaps also withdrawal symptoms. (Screaming migraines and fever) The seizures have picked back up to a couple a day. He's had two since waking up this morning...
I'm hoping the Onfi kicks in soon, though it probably needs to go up in dosage.
Leo was supposed to go to school Wednesday. Instead he went back to the hospital.
I thought I was over the "it's not fair" thing, but I'm ashamed to say that this past month I've succumbed on occasion. Right now my worries for Leo are all encompassing, all consuming, and ridiculously exhausting. Why me? Why HIM?! 
As always, there are no easy answers.
No answers, but there are ways to "deal" and there is hope, always.

“If you’re going through hell, keep going.” --Winston Churchill









Comments

Post a Comment

Popular posts from this blog

The School Bus As Metaphor

A school bus can mean all sorts of different things: dread, boredom, excitement, responsibility, change...it means something different to all of us. I was primarily homeschooled as a kid, and though I preferred that, there was still an element of desire and curiosity for me every time I saw a school bus when I was young.  I couldn't help but wonder what it would have been like to be part of the school bus world. Of course I didn't have to wonder about it for very long because I did, in many ways, have the ideal education. There was that time I took the winter off from school instead of summer to practice my extra curricular work which was...downhill skiing and snowboarding. Then there was the part-time jobs at the local farms that I was able to do because of my own set and very flexible school hours. To clarify, because it sounds like I didn't do any academics at all in the above two sentences, I did. Lots. Tons. But I did them efficiently and completely independently, e

With Mixed Feelings

So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis

The Move

Leo Clement has moved, you guys! The blog is now being hosted by a different platform, and with some awesome new results. Come check it out! All future posts and updates can now be found at the  Little Lion's new digs. Hope to see you there!