photos taken with my phone
I think we have good news from the neurologist. Or at least neutral news. It appears that nothing new has cropped up with Libby's epilepsy. And THAT is good news. The other good news is that Elizabeth had a great time at the neuro's office because I let her get a chocolate milkshake beforehand and take it with her. :)
But, let me backtrack a bit and fill in some gaps. I never really explained what had happened and I want to do that now. If only so that I will remember it next time.
We got a call at noon last Thursday saying that Elizabeth was having a seizure at school. By the time we go there, she had totally regained consciousness and was on the bed in the nurse's office. She was very confused about what had happened and didn't remember much so the teacher filled us in. She had not felt well all morning (she often has migraines) and had been given Advil at snack time. Right before lunch, a little boy in her class got sick all over one of the desks. To help them clean up, the teachers combined both second grade classes into one classroom and it was fairly loud and chaotic - just exactly what can trigger a seizure for Elizabeth. Within minutes, she said she started seeing sparkly lights all over the classroom (the first time she's ever had an aura before a seizure) and told the teacher that she didn't feel well. The teacher put her at a desk and Libby immediately put her head down, but it got worse and she got scared and started to cry. The teacher got her up and started walking her towards the door to get her out of the classroom. But, they didn't make it.
As soon as they started walking, Elizabeth had a grand mal seizure. Her teacher actually saw her stiffen and start to fall and was able to catch her before she fell into a large bookcase. She scooped her up into her arms and ran with her to the nurse's office while Elizabeth seized in her arms. Elizabeth has no memory of any of this. When we got there, we had to tell her what had happened and she didn't believe us. In her mind, she had fallen and hurt her chest. She simply had no idea. She was also having chest pains, so we spent most of Thursday afternoon at the ped's office getting checked out and then making arrangements to see the neurologist today.
Needless to say, it was rough emotionally on all of us and horribly scary for Elizabeth, her teacher, and others at her school. My biggest fear was that something had worsened with her epilepsy. It had been 21 months without a seizure. All weekend long, I've had a million questions and fears going through my head. Why a seizure now? Had it progressed? Is another part of her brain now affected? Are her seizures going to be controllable now? Is it going to cause cognitive problems? Do we have to restrict her activities?
And the hardest part of all of it - the part that KILLS me as a mother - is that she loses so much of the confidence that she's gained since the last one. It is now scary again for her to be alone, for her to play on the school playground equipment, even to go to the bathroom alone at school. Building up that self-confidence is so hard. And I can't tell her she won't have another seizure. I can't protect her. It kills me. :(
But, today the neurologist felt confident that nothing has changed. She was very calm and matter-of-fact about it and said that she thinks that Libby has just outgrown her medication dosage. Unfortunately, we can't increase the dosage on this med because when we did that last year to try to help with her migraines, Elizabeth became clinically depressed. It scared the life out of me and we can't risk that again. So, to combat the side effects that come with increasing the dosage levels on this med, we have to switch to another medication. Which sounds like no big deal. But, it's a HUGE deal. With epilepsy meds, you can't just go off one med and start another. You have to very slowly wean yourself off of one med while you slowly increase the dosage off the other one. It can take 5-8 weeks to complete the process and during that time, you are at an increased risk of a seizure.
So, that's where we are. I'm trying to be calmer now and realize that this is not necessarily bad news. She's growing and things are just going to change as she grows. We've changed meds before and gotten through it and we'll get through this one, too. And she's doing better. I think she feels more confident hearing the neurologist say that she's okay and that it's "just" a med switch.
She was laughing and playig with the "baby toys" at the neuro's office today and practically skipped out of there after the neuro told her that her exam was perfect. So, that's our attitude for right now. Life as usual with lots of bravery thrown in for good measure. :)