I get asked about Libby a lot. How is she doing? Any more seizures? What's going on? And the surface answer is that she's doing okay and hasn't had any more seizures. As you can see, she's a happy little 8-year-old girl a lot of the time. Playing outside with her big sister, cracking jokes that make Emily almost cry with laughter, and generally being a normal second grader. That's the answer I give when it's a mere acquaintance who asks or when I'm in a hurry or when I'm just too exhausted to really get into it. "She's doing fine. Thanks so much for asking."
But, it's so much more complicated than that. And just in case this can help just one other parent who's dealing with epilepsy, it's worth the time and the effort to put it out there. I'm working on an entirely separate Typepad page with Libby's story on it, complete with medical information and links to resources on it. But, it's taking awhile and I want to get this down. So, here's a bit of the complicated answer to how she's doing. *Warning - this is really, really long.
The truth is that epilepsy can be dangerous at times. Obviously, if she has a seizure at school (her seizures are tonic clonic seizures, commonly known as grand mal seizures) and falls, she could hit her head or break a bone or otherwise injure herself. Because her seizures have been well-controlled, we have not put any limitations on her - we allow to her to use all the playground equipment, do all the sports, etc... And, yes, it's scary somedays when I think about it, but she has to feel like she has a normal life, so it's what we do. But, the danger of injuring herself is always there.
Another danger is simply the seizure itself. Both because if a seizure lasts too long, it can injure or damage the brain and also because every time the brain seizes, it strengthens those seizure synapses and makes the brain more likely to seize again. Which is why controlling her seizures is such a big issue. Every time she has a seizure, it makes it more likely that she'll have another.
Which brings us to another danger - the medications that control the seizures cause other complications for her, as well. Anti-convulsants often impair or slow down the brain's cognitive functions. They can also cause tremendous fatigue, mood swings, loss or increase in appetite and many more complicated side effects. For children, the cognitive slow down and fatigue can make it more difficult to learn, to process input, and to understand the information they're receiving. It may take a bit longer to do homework, they may miss a point or two that the teacher makes, and they may be confused by some things that never used to confuse them. So, there's an academic danger of falling behind and not being able to keep up with their classmates. And the danger of fatigue is huge. Because sleep deprivation is a seizure trigger. So, you put a child who can't be sleep deprived on medications that make him or her exhausted and it gets really tricky to keep them well-rested and safe.
So, with all of that medical information, answering the question, "How is Libby doing?" could take me a year to answer. LOL! The truth is that it's a day-to-day process. It's two steps forward and one step backwards a lot of the time.
We're still switching medications - one more week to go. This new medication is Keppra and it is causing her to be extremely tired. So tired that over spring break, she was taking two- and three-hour naps to get through some days. She can't do that now that she's back in school. She's been in the nurse's office 3 or 4x a day since break ended - mostly because she's just so tired and the fatigue is causing headaches. And she's struggling to eat because she's so darn tired. Which means an already very thin child has lost weight and she simply can't afford to lose any weight. AND, on top of that, her medication dosage is tied directly to her weight. So, losing a few pounds when you weigh under 50 pounds to begin with, can be scary - it can impact her meds and her seizure control. Sooooooo....we have to force her to eat and find creative ways to get fat and calories into her. Right now, we're using ice cream and Carnation Instant Breakfast with whole milk. Good nutrition has to take a back seat right now to weight gain.
And on and on - there are so many issues to deal with every single day. There's the issue of how much Vitamin B6 and magnesium she needs to help her with the side effects. There's the issue of her fears and anxieties that can almost cripple her sometimes. There's the issue of her being really moody and crying over every little thing. There's the issue of worrying that her little friends will stick with her and will be able to understand her moodiness. I never know if I'm going to be called in to school to bring her home because she just can't make it through the day. We're not keeping up with violin lessons right now or doing a lot of the weekend Girl Scout activities. And trying a sleepover last week was disastrous. We're lightening her load as much as she can.
So, yes, she's doing okay. No more seizures. And she's happy and smiley a lot. She's an amazing little kid and, when she feels good, she's the happiest child in the world. The trick is to find a way to keep her feeling good and that's not always easy. I'm really hoping that if we can just get through the next 6 weeks of school, we'll be fine. We'll have the summer to figure all of this out, to get more rest, and to get used to the medication.
So, there you have it. And, it's exhausting, it's terrifying, it's heart-breaking, and it's completely uplifting somedays. She is truly the bravest person I've ever met in my life. Every single morning that she walks into that school building without me is a tremendous act of bravery. And I am incredibly lucky to be her mommy.
I'm also incredibly lucky to have the friends I have. And I'm going to take a bit of a break next week and go visit Sharyn. Truly, truly looking forward to it. :)
