Stupid cast. Stupid, stupid, stupid epilepsy.
Yesterday was the cast-getting-off day for Libby. We ASSumed that we would show up at 9 am, get the cast off, get an x-ray, and be done. Um...........................no.
When we first got to the orthopod's office, we could see and hear someone else getting their cast taken off. The saw was loud but it didn't appear to be overly loud and Libby knew that it wouldn't hurt her so we were joking about the sounds and the feel of the saw while we waited. She was in a great mood and not even remotely scared.
A few minutes later, the tech came over, showed us the saw up close, made Libby giggle about it tickling her, and then SHE TURNED IT ON.
And that's when it all went downhill.
The sound of the saw three doors down wasn't very loud. But, up close........................whole 'nother story. That saw was loud. And the very second that the tech turned it on, Libby grabbed her head with her free hand and yelled, "Mommy! My head!!!!!!!!!" I looked at her blankly for about a nano-second and then realized, "OMG! She can't be around loud sounds without getting a migraine or a seizure." I shot out of my seat, yelling at the tech, "Turn it off! Turn it off! She has epilepsy!" I'm sure the tech thought I was totally out of my mind. Because what the heck does the sound have to do with epilepsy? Right?
Nothing. Unless your seizure activity is located in your temporal lobe in and around that part of your brain that is also responsible for controlling sounds. Loud noises can be a seizure trigger for her. Extremely loud noises can also cause extreme pain - she describes them as sharp, shooting pains that make her feel like her head is going to explode. And that's what was happening.
The tech turned the saw off as quickly as she could but the damage was done. Libby was in pain, lightheaded, and could barely keep her eyes open. And we still had to get the damn cast off. So, we covered her ears and just cut that cast off as quickly as possible.
I still thought we were going to be okay. She had said that with her ears covered, the pain was subsiding. So, we got her over to x-ray and sat her down to get the x-rays taken. She was also complaining that her arm felt so funny without the cast that it was making her sick to her stomach and making her head "too fuzzy to see anything." And, of course, I had to move behind the window and couldn't be in the x-ray room with her. They were done quickly because she was crying through the whole thing and calling for me, saying over and over that her head hurt and that her hand was going to fall off her arm and that she was lightheaded.
I stood behind her and tried to calm her down, promising the moon if she could just hang on for a few minutes. But, it was too late. She went into a full-blown panic attack brought on by the pain and the fear of her arm feeling so unsupported and just as I leaned down to hug her, she leaned into me and her legs kicked out from the front of the chair and I realized that her eyes were rolled back into her head and she was seizing.
"NOOOOOOOOOOO!!!," was all I could scream silently.
We made it 18 months without a seizure. EIGHTEEN MONTHS. That is HUGE. And now we're basically back to square one. Because when you have a childhood diagnosis of epilepsy, there is always the chance that you can outgrow it. The clock starts ticking from the time of the last seizure and getting to 2 years is a milestone. It's the magic number. If you can make it to 2 years without a seizure, the odds of you outgrowing it are totally in your favor. And I really, really thought we were going to make it. I had hope. She was doing so well and I had bragged to everyone that she's never been this healthy.
But, she's okay. She bounced back well and slept very well last night. And I'm okay. I'm terribly disappointed and sad but we've been down this road a lot of times before and we'll all be fine.
In the meantime, it helps to get mad. So, epilepsy...are you listening? Because you can bite me! We are going to outgrow you. It just might take longer than we had thought. Because the alternative just simply is not acceptable.
