a seizure post not for the faint of heart

Seriously. If you don't want to see pictures that might very well make you tear up, please do not continue reading this post. Just skip it and pretend like Miss Ribbons has never had nor will ever have a seizure and don't try to imagine what she might look like if she did. 

Also, I'm posting this for two reasons: 1) It is a very real and very big part of our lives right now. Seizures have pretty much taken over our little girl for the last 10 months and Ryan and I have been on a mission to make. them. stop. 2) I've had a lot of questions from others {Rett families, doctors, friends/family, babysitters, teachers/administrators, etc.} about what she looks like when she seizes. 

So, here you go. 

First, Leah's seizures have kind of morphed over the last 10 moths. When they first started, she got really stiff and then would have this pulsing action go throughout her entire body. It was really creepy to watch and incredibly sad. Afterward, she was exhausted and would sleep a lot. She usually had one bad day with 5-15 seizures and then none for a span of a few weeks. We started her on Keppra (Levetiracetam) and increased the dosage slowly over the course of a few months.

Around the beginning of the year, the seizures started to increase in number. Sometimes she'd pulse, sometimes she wouldn't. But she'd have two one day, then none for a few days, then six, then one, then none. There really was no rhyme or reason to it. She'd have them while watching TV, or while sleeping, or while at school, or in the car, or when running in the field. We continued to increase the Keppra.

In March, she continued this trend, but also had tiny seizures every once in awhile. She'd stare off into space and then snap out of it. And then stare. Then come back. She would do this for a few hours - 20-30 even. We continued to increase the Keppra.

Sometimes we can "snap her out of it" by saying "KA-POW!" Leah thinks this is hilarious and will sometimes start to laugh and come back.

By April, the seizures were just more of a stiff body and staring eyes, but not so much pulsing. She also had them pretty consistently every day - usually 1-3. She could have them in church and not a soul around {no pun intended} would even know. Sometimes she will make different vocalizations or outbursts after, but if you're not familiar with what she normally sounds like, you wouldn't know the difference. To be honest, I much prefer these seizures to the pulsing ones, if I have to prefer one at all. Ugh. Near the end of the month, we started her on a new medication called Clobazam (Onfi) in addition to the Keppra, but reduced the Keppra dose a bit.

In May, she continued to have 1-3 each day and they varied in length from about 15-90 seconds. Sometimes she'd nap after, sometimes she wouldn't. But the Clobazam was making her a monster. And a zombie. Can you be a monster {mean} and a zombie {seriously sleepy all the time} at the same time? Yes, you can. I called her a human pinball because she would walk around the house running into walls and chairs and doors and counters, bouncing off and walking right into something else. If you're wondering, he head is exactly the same height as all of the door handles, which is perfect. She was so dizzy. She kept her strength for things like stairs but could never do it by herself because she was so unsteady. We played around a bit with dosages but continued on with Clobazam and Keppra. 

By June I'd had enough of Clobazam. Her seizures were pretty steady at 1-3 each day {that we saw}, but she'd still have between 4-10 every once in awhile. I figured if the medication wasn't doing its job of getting rid of seizures, there is no side effect in the world that is worth it. And so we started to ween her off the Clobazam. 

This month we got her completely off the Clobazam, used just Keppra for a week and, just this week, started her on Depakote (Divalproex). Her seizures continued as normal for two days and then yesterday she had ELEVEN. She couldn't even lift her chin off her chest more than once the entire day. I think she smiled only once and she took a three hour nap. That never happens. 

But today, TODAY, she had no seizures. I'm quite sure that hasn't happened for at least a few months. It could be a fluke, but I really hope it's not. She was still a bit unsteady, but so much better than she has been. And SO much happier. It was wonderful to see. Since we've taken her off the Clobazam she's been so much more gentle and kind. I just hope we're headed in the right direction. It's been a long 10 months for us - and most definitely for Leah. Getting this under control will help us to move forward with eye gaze and Kindergarten and so many good things. Here's to hoping!

As for what she looks like, these pictures were taken last Friday at Kate's checkup. I hate looking at them. But if it helps someone to not feel so alone, then it's worth it. If it helps someone to not be so afraid, then it's worth it. If it helps someone to have a desire to learn a little bit more or be a little bit more understanding, then it's worth it. Most definitely worth it. 

First, the stiffness. Honestly every single muscle in her body contracts. No wonder she's tired afterward!

 More stiffness with the beginning of the stares. Her left arm often turns in like this.

Her body then relaxes somewhat, but she's obviously not back to normal. Staring off {for her, always up and to the left}, and often lots of drooling.

One of the hardest parts for me to watch is her eyes. Those beautiful, bright blue eyes that are usually so clear and full of life suddenly become clouded and so...lifeless. It's awful.

And more staring. When we're outside I have to make sure we cover her face so she doesn't stare into the sun.

And there you have it. Feel free to ask any questions - I'm happy to answer if I can. Also, can I just give a shout out to Leah here? She takes her medication like it's nobody's business. She is the bravest girl I know.