Seizure update

27 May

I’m at work today and it’s lunchtime. I would be at the hospital visiting with Jade and Michael, but I called first to see if they needed anything and it turns out Jade is napping right now. So instead of disturbing her sleep, I’m taking a few minutes to update you on her situation. Bear with me, it’s a bit long because I’m including lots of details.

First off, thanks so much for all the supportive comments, e-mails, and phone calls. It’s so heartwarming to know you’re all thinking of her! Kelly and Nita and dropped off a container of butternut squash soup (yum!) and Alpine Bakery bread (double yum!) last night, so I won’t have to stress out about supper when I get home later today. All your good wishes and prayers give me so much strength!

Monday morning, I arrived at the hospital at 8:45; I saw that Jade’s arm was bundled up in a bandage to keep an IV thingy (what’s that part that stays in your arm called?) in place. She was sleeping. I looked at Michael and said, “She had another one, didn’t she?” He nodded.

This one was the longest one yet, but the good part was that the doctor was right there when it started, so he actually observed the seizure. After she’d been in the seizure for about 5 minutes with no signs of recovery, they gave her a dose of Valium. Another 5 minutes passed and she was still convulsing, so they gave her another dose. A few minutes later, it was over. I wonder if the Valium did it, or if she would have finished then anyway.

They decided to do a CT scan. Michael was with her for it and he said when they strapped her to the board, they were going to restrain her arms, but he told them not to. She’s hated having her arms restrained since she was born; she would always struggle to get them out of a swaddle. They let her just relax on the board for a minute or two, and she fell asleep, and the scan went off without a hitch. Apparently, the radiologist was astonished that it had been so easy.

Jade woke up just before 10 a.m., just long enough to get a dose of Clobazam (the anti-seizure medication) mixed in a spoonful of ice cream, and then she fell asleep again.

Early in the afternoon, our wonderful nurse Janice told me that the doctor was coming in to talk to us about doing a lumbar puncture, also known as a spinal tap. Even though they thought it highly unlikely, the specialist in Vancouver recommended testing for meningitis; small children sometimes don’t get all the expected symptoms. I’ll write about the spinal tap procedure in a separate post, so as not to bog this one down with the details.

The hardest part about yesterday was coming to terms with the sheer volume of drugs Jade got pumped into her little system. A list:

  • Valium (5 mg total) during seizure
  • Clobazam 2.5 mg (anti-seizure medication — I think it ended up being 5 total by the end of day)
  • Midazolam 12 mg total by mouth (this was really distressing — details in the spinal tap post)
  • Tylenol (250 mg) to ease pain for spinal tap
  • Medazolam (2 mg) via IV to sedate for spinal tap
  • Ketamine (5 mg) via IV to sedate for spinal tap
  • Amoxicillin for ear infection

Talk about a pharmacopoeia.

I saw Jade this morning before coming in to work; she’d had a terrific night’s sleep (once she fell asleep, which was very late… not surprising given how much time she spent asleep during the day) and was in a great mood after having a hearty breakfast. Michael took advantage of my presence to have a shower. Jade showed me how happy she was by crawling around on the hospital bed; I was impressed at how she’s so quickly learned to be careful with her hand with the IV thingy (gotta ask the nurse about what it’s called!) — it’s not so comfortable when you try to crawl on it.

It looks like Jade will be in the hospital for at least one more night, and she’ll be staying on the anti-seizure meds for at least a week. After that, we foresee taking her off and watching to see how she does. Hypocritically, after having such a hard time watching her have all those drugs yesterday, I’m now worried about taking her off the anti-seizure meds.

As for the trip to Vancouver, it doesn’t look like it will be happening anytime really soon. Dr. Avery explained that because “seizure disorders” are pretty common, it’s difficult to get a neurologist riled up about it. Also, having the work-up by the neurologist is unlikely to change the course of treatment (which is to give anti-seizure medication). So it’s not really considered urgent.

I guess we can say that Jade officially has epilepsy. Apparently, whenever someone has a two or more seizures not associated with fever, it’s called epilepsy. That’s about as scientific as the definition for colic.

The good new is, seizures aren’t inherently risky, unless they go on for a long time (meaning getting up around 30 minutes) or if the victim can’t breathe. Or if they’re in a dangerous situation, of course, such as driving, or riding a bike, or on the stairs, or in the pool… (Given this, we wondered if the Valium was really necessary yesterday morning…) The other good news is that it’s common for kids with epilepsy to just, well, grow out of it.

Michael and I are doing pretty well. We make a good team, and I’m grateful that he can be at the hospital. He told me people keep commenting on how calm he is, but he says he doesn’t necessarily feel that calm. I could really see it when I was visiting them last night after Big Band practice. Michael was in the hall, waiting for Jade to fall asleep. Whenever she got quiet or if he heard a thump from the room, he’d rush over to the crack in the door to check on her, worried another seizure was starting. Only to hear her start chattering about something, telling him she was just fine and not sleepy at all.

For my part, I had a couple of good cries at the hospital yesterday, but I am feeling relatively calm. I can’t explain it, but after all we’ve been through this weekend, I just believe that we’re all going to be okay.

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5 Responses to “Seizure update”

  1. McMommy May 27, 2008 at 3:42 pm #

    Fawn, again I’m so in awe of how well you and Michael are handling the situation and what a trooper Jade is.

  2. Marian/Gran May 27, 2008 at 4:28 pm #

    Fawn, I told Michael yesterday what a great team you are…. especially in crisis mode.
    I remember being with Lindsay during her surgeries. You stay calm because you don’t have a choice. Then you have a good cry when nobody’s around! I ended up going with a nurse to bring Lindsay back from the recovery room because there wasn’t another nurse available and she told me since I was so calm it was OK to take me. She’d never taken another parent.
    Anyway, great job and lots of hugs and kisses to you, Michael and Jade. Love you.
    Thanks for the blog entries. I’ve been keeping Granny and Pop updated and they both send their love. I’m heading home tomorrow afternoon.

  3. kara May 27, 2008 at 6:54 pm #

    You two do sound like quite the team. Going through events like this in our lives really shows what kind of marriage you have. You two must have a very strong one!

  4. Stacie May 28, 2008 at 9:08 am #

    Thanks for the update!! You guys sound like you are helping each other through this, so good for you at this crazy, stressful time. How great though, that Jade is doing ok and in a good mood for the most part!!! What a kid!!! She’s so freakin’ cute.

    Geez, I remember Gabe my dog, going into seizures which only lasted a minute or so. That minute always seemed like it lasted FOREVER! I can’t imagine watching your own child go through that for 10 minutes. Hang in there, sounds like they’re figuring things out. And you’re totally right, things WILL be fine! 🙂

  5. Beanie May 28, 2008 at 5:51 pm #

    Jade sounds like such a little trooper! Chances are, she’s better behaved than I’ve been in the past when it comes to getting IV’s (and when I say in the past, I mean a couple years ago)…

    I don’t know what the technical term for it is, but when I’ve been on an IV therapy in the past, they’ve always refered to it as an “IV lock”. Although I prefer the term “thingie”. I hate those things and they sound less intimidating that way. At one point, I was an outpatient at the hospital and had to wear one of those stupid thingies for 4 days.

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