Hi. I was doing really good blogging last month, but this one is going very oddly, and I haven’t been able to bring myself to sit here and pound out an essay about my happenings.
Don’t get me wrong, it’s not been all bad. I’ve had some amazing adventures, met some long-time Internet friends face-to-face for the first time, taken the kids to several amusement parks and made great progress toward finishing three classes in the next three weeks at Western Governors University. I’ve cooked and cleaned, laughed and cried, plotted and planned, and been overwhelmed, underwhelmed and not particularly whelmed at all in intervals.
But the most frustrating and impacting event this month was that Kaeloo had another seizure. Man, I don’t know if you have ever known someone that is epileptic, but it is crazy scary. Every now and then, my dad tells the story of the first time I had a seizure. He was a flight medic in the US Army, and when he found me seizing, still in uniform, he just stood there holding me, dumbfounded. He literally had no idea what to do. All of his training just completely fled his mind as he stood there watching me convulse and my lips turn blue with Grand Mal seizures. The first time Kaeloo had a seizure, on March 9, 2012, it was oddly similar to this. The Murse had just gotten home from work and fallen asleep after a 12-hour night shift. I had walked out of the living room for one of hundreds of reasons that I might have done so, and returned to find her face down, covered in her own vomit, twitching violently, lips purpling before my eyes. I scooped her up, marched her into my bedroom, and woke the Murse up. He stood there with her in his arms, looking much like my father must have — equally paralyzed. We live very close to the hospital, so we drove her ourselves rather than calling for the ambulance.
She didn’t have a fever, she didn’t have any trauma, and there was nothing indicated on the CT scan they gave Kaeloo in the emergency room. As scary as that all is, after one seizure, nothing really happens. She was sent home soon after the event, and we were scheduled to see her pediatrician and to have a one-hour EEG done. The results of the test showed nothing, and it was written off as a fluke. Boy, what I wouldn’t give …. A second seizure, on March 29th, happened while the kids were in the bathtub together. Archoo thought it was hysterical that his sister ended up face first in the tub. I was frustrated, but I really thought it was better that he not be scared by it. I asked him not to laugh, and had to warn him a few times in the following weeks that I didn’t find his purposeful twitching amusing. The boy was 4: I mean, he didn’t get it, but I was really, irrationally, hurt by his oblivion. This time, the Murse was still at work, so I called the ambulance (we only had one car then). I was really frazzled, holding this twitching child in my arms in a towel, and attempting to tell Archoo how to dry himself off by himself like a big boy so that he could be ready to go. By the time the EMTs got there, the Murse was home. He rode with Kaeloo to the hospital, again, still in uniform, and Archoo and I took the car and some clothes for the little lady, following a few minutes behind.
The second seizure sent us into a dizzying spiral of tests and appointments, all of which had to be conducted in Philadelphia because the local hospital isn’t equipped for pediatric neurology. And then we had this dizzying choice to make about her medications. When I was a kid, I had two seizures. They called it pediatric epilepsy, and I was given phenobarbital for two years and then weened off, never experiencing another episode in my life. Now, it’s not common practice to give barbiturates to children as a first-string option. We also weren’t thrilled with the idea of giving her addictive benzos or drugs that processed through her liver. We chose levetiracetam, or Keppra, which is processed through the kidneys and is safer for her body. But it doesn’t have the same sedative effects as other options, and the doctor warned us at the time that she could experience changes in mood that would make her mean and generally angry.
She was doing some “terrible two” nonsense when this all started, and we were kind of like “yeah, how much worse could she possibly be?” But I’m positive that the Keppra is having the effect about which the neurologist warned. She’s a screamer, typically opting for shrill shrieks, slaps, hair pulling and kicking instead of words when she wants or needs something. And holy cow — she has a set of lungs. It’s difficult. Wherever we go, the Murse and I are the parents with the screaming, rude child. . . Despite the fact that Kaeloo has been diagnosed with epilepsy and that she takes mood-altering medicine, she is just generally seen as a problem, and we face dirty looks and rude remarks, essentially because we’re not comfortable doping her up and destroying her liver just for the niceties of peace and quiet [believe me, it’s tempting].
The seizure on the 5th was her 5th. Every time she has one, they up her dosage, and she goes longer without an episode. But she has to be completely seizure free for two years before they ween her. I’m beginning to doubt that Keppra will be effective in the long term, so we’re going to discuss some other options with our doctor next month during her appointment. I’ve been stressing about it every day because there just isn’t an easy answer, and there’s no guarantee that any of them will completely eliminate the seizures as it did for me. She could have to take meds her whole life to suppress them . . . and I really don’t want to think about that. Maintaining hope that this is just the same childhood epilepsy that many kids have and grow out of gets harder every time she has an episode, though.
Nearly 500 cases of epilepsy are diagnosed across all ages daily, as opposed to 136 cases of Parkinson’s. Yet, here are the bare facts:
As another friend of mine Southern, Geeky, Gamer Belle, stated, “One thing I learned from my seizures is that epilepsy is a silent disease. Because you are fine on the outside it is your brain that has the issue, few people are really willing to talk about it let alone truly support it.” That’s pretty much true, and it’s terrible. There’s been very little progress since I had seizures almost three decades ago. We’re no closer to understanding the exact causes, and we’re no closer to the cure. Awareness is low and understanding even worse. . . . Sad all the way around.