Thursday, August 1, 2013

Ellie

When we first noticed Ellie's seizures nearly three years ago, we were reassured when most of the information we read about her type of epilepsy (Childhood Absence Epilepsy) stated that it was usually easily treatable with medication and that most kids eventually outgrew their seizures sometime in adolescence.  Three years and a couple different medications later though, we are discouraged that she is still having dozens of seizures per day.  They interrupt her day at school and there are many common physical activities which are too dangerous for her (biking, independent swimming, gymnastics, and even walking near busy streets, etc).

Despite all that, the hardest part for her is that the older she gets, the more her peers notice the seizures.

For the most part, her friends have been very kind and understanding of her frequent lapses of unresponsiveness, but by the end of last school year people well beyond her circle of friends were starting to notice the seizures and draw attention to them.  I had the school counselor and teacher call me several times this past year to explain situations when fellow students started yelling at her or getting upset during a seizure wondering why she wasn't responding to them.  Towards the end of the year, her teacher recommended that we just tell the whole class about them, so that, like her friends,  they would know to just be patient and wait for the seizure to pass before expecting a response.   Ellie takes it better than expected, but it still grew to be an embarrassment to her.

With the intractability of her seizures with medication and the fact that they seem to be affecting her life more lately, we recently decided that it would be best to take Ellie to a new neurologist.  We were very happy with the new doctor and I appreciated that she the fresh take on her treatments.  As part of the work-up at the new doctor, she got an EEG.  One had been performed as a part of her initial diagnosis almost three years ago, but she hasn't had one since.

I was shocked at the number of seizures she had during the 45 minute EEG.  Not only did she have several normal-length (10-15 second) seizures, but she also had numerous 1-2 second seizures.  Ones that we probably would never even notice in the course of a day.

It was discouraging to say the least.

One thing it did do for me though, was that it gave me a resolve that it's time to do something new with her.  We had already been considering homeschooling her this upcoming year, but that EEG gave me the surefire knowledge that it's absolutely the right thing to do.

Up to this point her teachers have been very attentive to her and her needs, but still we feel that she is not thriving at school and the long days completely wear her out.  She comes home exhausted and we very much worry about her getting lost in these upper grades as expectations for student independence increase. I figure that even a distracted mommy with two kids at home can do far more to teach and be in tune to her students than a public school teacher with a class full of 20+ students, several of which also have special needs.  I am a tad nervous about the lifestyle change it will entail, but it's comforting to know that I have two enthusiastic students who couldn't be more excited about it.  (Adam was insistent that he not be left out of the fun and I figured that having a buddy at home would probably be good for Ellie, so he is staying home as well.)

Now the books are bought and the school district notified....stay tuned for awesome adventures ahead!


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5 comments:

Denise said...

It's so hard to make the tough choices, but good for you for being willing.

I know Emma's hearing impairment is not on the same scale as Ellie's seizures - but she too hates to have it draw attention to her - it makes her feel different and she would rather do anything than feel different.

I know you're going to do so well and find a way to help Ellie thrive.

We'll keep you in our prayers.

shannon said...

So sorry to read this about Ellie's continuing battle with seizures. Hope and pray the new doctor can help you in a new more hopeful direction. I'm inspired by your choice to homeschool. And I can't wait to hear about Prince Edward Island!

Erica Christensen said...

Ellie and Adam are in very good, intelligent, competent, and loving hands! What a fabulous opportunity for you and the kids to have fun and lasting memories while learning together. So excited for you! You will be in my thoughts and prayers.

Cindy said...

Good for you. Lara! Give me a call, if you get overwhelmed. I kinda miss my home school days.

Jennifer McArthur said...

I am always inspired by you, Lara, and the care you take of your sweet family. I'm so sorry to hear about dear Ellie. I commend your strength, perseverance, creativity, and patience. Good luck this coming year!

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