|"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 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