Tuesday, October 19, 2010

Ellie's FAQ

I hope I don't bore everyone with all my posts about Ellie, but it's hard not to blog about something that is such a big part of our lives right now. There are a few questions that I keep getting asked again and again about her condition, so in the spirit of preserving this for our future blog book, I thought I'd do a FAQ post about Ellie's epilepsy.

How did you notice the seizures? (this is by far the thing I get asked the most)
The very first time we knew anything was going on was Sept. 22nd. We had just returned from piano lessons. I was at the top of the stairs and Cami and Ellie were talking downstairs in the entry way when suddenly Cami started screaming Ellie's name, "Ellie! Ellie! Are you okay?" She screamed for about 10 seconds while Ellie remained completely unresponsive, then eventually, but very confusedly asked, "What?" and went back to normal. After Cami explained to me what had happened--that she'd stopped talking mid-sentence, rolled her eyes back and look like she was going to pass out--I was worried, but hoped that it was an anomaly. But it was not to be. As soon as Emma heard what had happened she calmly informed me that Ellie had done the exact same thing in the car earlier that day. I observed it once more that evening and knew we had a problem. We took her to the pediatrician first thing the next day and they confirmed that it sounded like she was suffering from "petit mal" or "absence" seizures.  Since then, we've noticed that she has them dozens of times a day. 

How long do you think she'd been having them?
There's no way of really knowing, but we think we caught them pretty early.  We'd gone camping the weekend before and she'd been acting "off" ever since then.  We think that the drastic lack of sleep from the night of the camp-out may have triggered the seizures to begin.  (Just to clarify:  Nothing is known to cause seizures, but fatigue, illness, hyperventilation, and stress can trigger them in someone who is already seizure prone). 

Will she outgrow it?
Given her diagnosis of Childhood Absence Epilepsy, the chances are good that she will outgrow it sometime in adolescence (probably at least 7-8 more years of it). 

What are the chances of her developing grand mal seizures and/or other types of epilepsy?

According to my internet research, it looks like she has a 40% chance of developing other kinds of seizures.  Having any other kind of seizure would greatly increase the likelihood of it being a lifelong affliction. 

Do you have a family history of epilepsy?
 There is no family history of the type of epilepsy that Ellie has, which is the case in approximately 70% of children with her diagnosis.  Glen has an aunt with hormone related epilepsy, but the neurologist said that they're  not related.

Will it affect her intelligence/brain development, etc?

This is one type of epilepsy that does not tend to effect intelligence or brain development.  The main problem with these kinds of seizures is that she's "cognitively absent" a good portion of the day, so the children tend to miss a lot of instruction time at school.  In addition, it often seems like they're being non-compliant since the seizures sidetrack their focus.  I volunteered to help with her reading group the other day and noticed her having 4 seizures during the 30 minute segment of time.  

What about school? 

Honestly, the first thing I thought when all this started happening is that I would homeschool her, so we didn't have to worry about her at school all day.  But after keeping her home for about a week right at the after the seizures started, I realized that she really, really loves school and I just don't have the heart to take  this one joyful aspect of her life away from her.  I do worry about her being too tired to be at school and truly it really does wear her out, but when she comes home bubbly and excited about her day (before collapsing on the couch) I know that it's the best place she can be right now.   We have a lot of snuggle time in the evenings and my house is messier than ever, but I feel like as long as she's happy and progressing  we can make it work.  I think I drive her teacher crazy with my constant updates and worries, but she knows that she can call me anytime if Ellie's ever really dragging her feet.

Does the teacher notice the seizures?

The teacher has been prepped and trained at how to recognize the seizures and how to redirect her when she "comes back to consciousness", but actually the teacher does not notice them at all.  I'm glad the EEG confirmed that she really is having seizures (although I never doubted), because right at first I think the teacher really thought I might have been mistaken. 

What are the possible side effects of her medicine?
The list of possible side effects are long--depression, nausea, lupus, headaches, drowsiness, dizziness, etc.  Thankfully all we've noticed so far is that she's pretty tired and clingy.   We have to be a lot more die-hard about bedtime with her than we ever were with the other kids.  She really struggles the next day even going to bed half-hour later than usual.  We figure she has at least 7 or 8 years on this medicine, so we're hoping that the drowsiness will fade after a time. 

Have you noticed a reduction in the number of seizures since she started the medicine?
Not yet.  The neurologist said it could take several weeks.  The information that came with the medicine said it can take 12-24 months. 

What do you worry about most?
1.  I worry about her injuring herself during a seizure.  Thankfully her actions during a seizure tend to be weak and clumsy, which means that she doesn't go slamming into things or anything.  We're keeping her off of high things (like playground equipment) just to make sure she doesn't walk right over the edge.  We've also had to keep a close eye on her in parking lots and near streets as well.  She's not a wanderer by nature, so she's scared us to death a couple of times when she started walking away from us during a seizure in a crowded parking lot.   

2. I also worry about her getting labeled as "weird".  I think she's young enough now, that her frequent seizures, the odd movements, and the ensuing confusion can be passed off as just being young and distractable, but my heart has broken a couple of times when some observant friend has asked her why she didn't answer or why she'd just done that strange thing. 

3.  The rest of my worries stem from the unknowns.  What if she has a grand mal seizure?  What if she can never drive?  What about swimming next summer?  What if the medicine doesn't work?  What if she gets horrible side effects from the medicine?   How can we help her to gain independence?   And on and on.... 

And the question I know you're all dying to ask....

Have the seizures negatively affected Ellie's stellar sense of fashion in any way?

Nope, not a bit.  Same with her smile and giggles--they still light up whatever room she's in.    :)



Dad-Mom said...

Cute as a bugs-ear and still a little fashion plate!! We love you Ellie Belly!!

Thank you Lara for the primer. There is nothing worse that the unknown and knowledge helps dispel a lot of fears and concerns.

Denise said...

Thanks for the update Lara. Keep em coming. It's so good to know what's going on.

And I have to say...I am so glad that you have not lost your sense of humor in all this.


K said...

I'm so glad her sense of style is still intact. What a beautiful and sweet little girl! We love you Ellie!

Momma Nielson said...

So glad I found your new blog! (I'm a little slow on the uptake.) I had no idea about Ellie! I hope she grows out of it soon.

annalisa said...

I also appreciate the updates of sweet Ellie!

Ellie is definitely fashionable :) She is just so adorable especially in her tutu with boots and tights! I really like her hair cut like that!

Katie said...

Ellie is so blessed to have a mother who is clearly doing her homework - I'm sure you feel like you've earned a medical degree over the last couple of weeks. Thanks for including us on the journey. Your faith & humor are a teaching the rest of us a thing or two as well.

angela said...

That was helpful! She is so lucky to have you.

Annette said...

Thanks for the update. I'm certain that a strong sense of fashion will be an asset to her!!

Jen said...

I'm sorry you're going through this. hang in there. We went through neuological stuff too with Matt and he has facial tics when stressed, fatiqued, etc. Just something else to add to the list of things a parent has to do. Glad she sill has great fashion sense. She'd fit right in here in Paris.

Julie said...

I'm a little late coming in on this (I check Recipe Shoebox all the time, but sometimes forget your other blogs). I'm sorry to hear about Ellie's recent medical adventures.

After all our experiences with our little Adam, I totally understand how scary the unknowns can be, and how the future can seem so uncertain. You'll be in my prayers! She's sure a cutie!

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