Thursday, July 19, 2012

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.


Eevi said...

Dear Maren and Leah,

You most likely wont have any memory of me as we were in the same BYU married one six years ago; however, I have followed your blog for a while now and find you both to be such an inspiration.

Leah, what a beautiful girl you are and so brave and strong.

Maren, you have a beautiful way of describing your life in an honest way that touches people's hearts while still maintaining a positive attitude.

So from a stranger, I pray that one day there will be a cure for Rhett and I will keep cheering for Leah's achievements .

Josh and Juli said...

Maren, I am friends with Carolee and Bryce Jaynes from high school, and I came across your blog from theirs a while ago. I knew OF Ryan, but didn't know him. Anyway, I hope it's ok that I read your blog. You put things so eloquently and I have been amazed at all you do and all you have to go through. My 3-year-old daughter had a mere 2 seizures one day last year, and it was enough to make me NEVER want to see anyone go through that again. I cannot even begin to imagine what it's like to see as many as you see on a daily basis with Leah. It's heartbreaking for me to think of that. My daughter's were, thankfully, just complex febrile seizures that had us scared at first while they examined her due to the fact that she had had two in a row, the second one being just focalized in her arm. I was so grateful there was nothing more to it, and yet still, months later, I can remember exactly what it was like to see her have her seizures and to feel so helpless and to just want her to be normal. You are brave. You are so strong. And every time I read what you go through while the rest of us naively complain of the day-to-day "normal" things in dealing with motherhood, I hope and pray that you will be able to enjoy more and more normal days with Leah and your cute baby Kate.

Ryan said...

Little Leah, you are hands down the bravest girl I know! I hate seeing you go through these seizures, and I wish that I could somehow take them all away. All dad's should have superpowers like that, don't you think!? Love you Beah!

Jessica Cromar said...

To the bravest girl and the bravest mom and dad I know, thank you for sharing your stories to help us all have courage and hope in the face of fear!

Anonymous said...

Hi Maren, Do you have an email address? I'd like to share some thoughts.

Claire said...

I'm so glad you got a seizure free day. Depakote is what gave us our first flawless day. You are a Rock star maren. Somehow after seeing literally thousands of seizures the thousand +1 still hurts. I am so happy you got a day. I pray for many many more! Love you and sweet little Leah!! My prayers are with you.

Emily said...

Wow those pics are hard to look at but amazing at the same time. They look very similar to jordyns! We are dealing with a lot of Them right now too. Probably 10 in the afternoon. She does them, has the staring also, and then goes back to normal. And like you said, she does it and most people don't even notice! Seems like we are always messing with meds, I hate it. But I'm glad you posted the photos, very interesting, can't believe it looks so similar.

mj said...

Marejl at gmail dot com

Erica said...

I think I know where she gets that bravery from...and I think I miss you a lot. and I send you hugs.

Cristi said...

So brave friend. Prayers sent your way. As difficult as it is to see- I love your honesty and courage.

You are one amazing mama. xo

brittani c. said...

You are one strong mama. When the day comes when Leah will be able to speak to you with words, she would tell you how much she felt loved during her most difficult times. Bravest girl I know, too.

Molly said...

Oh, Maren. She really is the bravest little girl ever. Keeping her in our prayers.

maryirene said...

i'm so sorry that she is going through this. it reminds me of seeing samantha having seizures. always broke my heart. my neice used to have seizures and just last year she was finally seizure free and boy did their family celebrate. i'll be praying for leah and your family.

lis said...

Love you guys. So glad things are getting better

Shamez said...

Hi there, will pray for Leah. Have u read this article? Might help...