Well, I’ll start off by saying that seizures suck. I haven’t posted in a while (surprise, surprise) but since my last one we’ve had a few jaunts in the ER due to seizure activity and illness. In the life of Lissencephaly seizures are almost always present and our situation is no exception.
A few months ago, Paige started a low dose of Keppra after a breakthrough seizure (I’ll get to this in a minute). Thankfully, there have been no harmful side effects like irritability, mood swings, lethargy, and rage. In fact, I’d say we have only noticed positive changes in her demeanor since starting. She’s more alert, cognitive, and has a wider range of emotions. Sure, she might wail and cry with a little more gusto than before, but on the flip she’s been giggling and laughing with vigor, as well.
Since she’s approaching two years old, I’ve been warned by her neurologist that since she’s growing bigger and more faster we might have to adjust her dosage more frequently. It really depends on the frequency and amount of breakthrough seizures she’s having. Coupled with an EEG we might come to find that we need to change or add a completely different medication to fit her type of seizure(s).
The past couple of months I would definitely say we’ve seen a “breakthrough” seizure. So far, I’ve seen 2 and they’ve been pretty nasty. The first one happened right before vision therapy and and she was in her Special Tomato chair. Suddenly, she doubled over and got really rigid. Her breathing became labored and she grunted and drooled. Her left arm was raised and trembling. Most likely, this was a tonic seizure and it clustered on an off for about 25 minutes. That’s a REALLY long time!!!
During this time I took a video of the activity and called Andrew to come home from work. We made it to the hospital and was hooked up for a one hour EEG. Paige didn’t preform for the neurologists and she was stable the entire time. However, based on the severity of her cluster, Keppra was prescribed.
I’ve honestly really relieved she’s on medication. Aside from her ACTH, she’s been able to dodge any type of seizure activity and medication for over a year and a half. It’s a nice security blanket to have and I feel better with the extra help.
Fast forward a few weeks and we have a young Will with a fever and a cold. His fever was treated with ONE dose of Tylenol and lasted half a day. A few days later Paige comes down with the same thing and I was hopeful it would be mild like her brother’s. WRONG! Paige started throwing up and the next few days were spent trying to get her to eat and drink. She was limp and her fever was high so I rushed her to CHP where she received 3 bags of fluids, oxygen, and IV antibiotics for a night. She was incredibly sick and it was so hard to watch. What’s kind of crazy is that fevers and illness often set off seizures and she had absolutely NONE throughout the whole ordeal. After a few days of rest she was back to her old self!
And now we come to this past Monday. This story is going to look a lot like the first because it was during vision therapy (again) and it happened in the Special Tomato chair (again) and it lasted for about 15-20 minutes (you got it.. again). When she came to she was perfectly pleasant and happy as a clam. Can you say roller coaster of emotions?!
Off we go to the hospital but this time I refused an EEG because I knew she wouldn’t preform and it would be pointless. Since she has a seizure disorder and they are going to happen I requested rescue medicine. I can’t go to the ER every time she has activity so I’m glad to have these around. She was prescribed Diastat and Kolonopin.
Diastat is pretty hardcore and I have to call the paramedics to monitor her when I administer it. This will also mean another hospital stay because this drug is essentially Valium and can labor breathing and slow her system down to dangerous levels. This drug will also knock her out for a day. I also requested Kolonopin because it is less intense and instead of being out of it for a day, she’ll most likely only sleep for a few hours. I feel a lot more comfortable with this drug but still hope I don’t have to use it. Both of these drugs have to be given if her seizure lasts more than 5 minutes and since both of hers lasted a lot longer, the odds that I won’t have to use them are pretty darn low.
I’m actually pretty happy with the way I’ve handled myself during Paige’s seizures. When I first thought of Paige having one I would get really anxious and get really scared. But after being there while she experienced one, I was actually really calm and talked to her in a soothing voice while she was struggling. When it was over, I just did what I thought I had to do and it was over. I’m not saying that I loved the experience because I hated it, but it wasn’t as scary as I imagined and I’m kind of proud of myself for not freaking out. Andrew and I made a pretty amazing team throughout and Paige handled everything like a rock star!!
Happily, our little Paige recovered nicely and she’s been having really good days and is working hard in her therapies. She’s smiley and laughing, scooting around on the floor, and watching her favorite show, Dora and Friends. Will is loving school and trying to beat cabin fever by building forts and calling people on the phone.