When I haven't updated in a while, it can mean many things; Jenelle is sick, I'm sick, We're just really busy, and/or I'm just don't want to jinx anything. This time, it's the later of those choices!
Since getting to the full dose on Banzel, we've started to see some decrease in seizures for Jenelle. And by that I mean... instead of big seizures every other day/week, we're seeing more time pass between episodes of seizure clusters. Improvement? Yes, you could say that. I've been biting my tongue, and knocking on wood, and just when I want to say things are better, Jenelle has another bad seizure day. Yesterday was one of them.
Thankfully, we now have a very good action plan in place for days when Jenelle has bad seizures. A few weeks ago, the family had been planning to attend a baseball tournament for Brett and Jack's travel ball team. It was rainy and cold, but Jenelle and I never miss an opportunity to watch her brother play baseball... unless of course she has a 4 minute grand mal. After her lengthy seizures, Jenelle usually falls asleep (in a "post-ictal" seizure state) for anywhere from a half an hour to two hours. So I stayed home with Jenelle while the boys played baseball (and won the tournament) in the rain.
Yesterday, Jenelle woke us with a grand mal lasting a little more than a minute (we think) at 6:00 AM. We never really can tell how long she has been seizing when she is sleeping, but I hear the familiar vocal noises and both Brett and I sat in bed silently for a minute, before I got up to check on her. It was one of those parenting moments when you lie in bed, double check that you heard what you heard, and wait to see if your spouse will get up instead. Of course, Jenelle was post-ictal for a while after, and I went back to bed turning off my alarm instead of hitting snooze. We woke frantically with 10 minutes to get Jack out the door for school. Nice way to start a Monday! On my way to work, I called Jenelle's teacher to give her a head's up. A few hours later, she called concerned as Jenelle had a drop seizure, and was again sleeping. After a few more seizures, I decided to get Jenelle from school, because my time was better spent watching her sleep at home, instead of ending up in the ER should the seizures get worse. Jenelle had a few more at home, but by dinner time was her old self again.
Speaking of dinner and food, Jenelle had a follow up last week with Dr. Idries, her GI doctor. Since stopping formula last May, Jenelle has lost 3 pounds, and went from being in the 75th percentile to the 25th percentile for weight. Dr. Idries wants to give her 3 more months without formula, but her her weight doesn't come back, we may be back on formula. I'm not too concerned as Jenelle is very healthy. In fact, at our last visit the doctor thought Jenelle was over weight, so I'm not really sure how 3 pounds made such a difference. So, instead of water and juice, Jenelle is getting more whole milk with her meals, and hopefully gaining some of that weight back!
As for the seizure improvement, I e-mailed Dr. Shields a few weeks ago to see if we could start weaning the Vimpat, but he would rather give it more time. We see him again in March. That is all for now. The kids are getting ready for baseball as opening day is two weeks away.
Thanks for the continued prayers. I'll keep you posted!
Tuesday, February 08, 2011
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I've followed your blog off and on for some time, and I know exactly how you feel regarding seizures and superstition. I've been knocking on wood constantly of late as my daughter Sophie is showing some improvement (knock, knock, knock) on Vimpat, the eighteenth drug we've tried during the sixteen years of her seizure disorder -- and it does seem that once I really start talking about it, the seizures creep back in. It's so difficult to just be graciously thankful --
I wish for continued seizure control for your beautiful little girl -- and health for you, too.
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