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.    :)


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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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October 1, 2010

 NOTE:  This is an email I sent to friends and family several days ago when we were just at the beginning stage of Ellie's diagnosis.  I am posting it here unchanged for journaling purposes. 

 October 1, 2010

Hello everyone,
Those of you who know me well, know that I am a writer.  Not that I'm very good at it or anything, but it's always been an outlet for me. It is my hope that by sharing these regular updates and photos with you, that I will keep friends and family up with Ellie's happenings, and in process also preserve, for posterity, this journey we're embarking on.     If you prefer not to receive these updates in the future, although I don't think they'll be too often, please let me know. 
Take care,
Lara
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Since Ellie started having her absence (it's pronounced "ab-SAWNS") seizures a week and half ago, she's been having them several times a day, mostly clustered in the afternoon and evening when she's tired.  Sometimes she just stares blankly.  Other times her eyes roll to the side slightly and her eyelids flutter.  Other times she absently and clumsily continues in a motion (this is the one that scares us the most). The one thing that stays the same though, is that she's completely unresponsive.  You can yell her name, touch her, wave your hand in front of her face, and still nothing registers on her face.  She doesn't look at you, her expression doesn't change, she stops talking mid-sentence.  It's disconcerting and we're quite anxious to get to the bottom of it. 

The first part of discovering the diagnosis, was this preliminary EEG to find out what's going on in her brain when she's having her seizures.  It's all a bit over my head (forgive the pun), but depending on the wavelengths and where they originate in the brain, it is very informative at determining what kinds of seizures these are and what her long-term prognosis MAY be.  The doctor instructed us to have her get 3-hours fewer sleep, so that she would be sleepy (and more likely to have seizures) during the test, so we (Cami and I) kept her up until 11:30 by letting her watch “Anastasia” on my laptop while we all snuggled up in Cami’s bed.
 

(FYI--Glen had to get up at 5:00 to take Spencer to seminary AND he’s doing a triathlon tomorrow, so he was excused from the late-night entertainment).  

Then we dragged Ellie out of bed at 6:30 this morning.  She was a little slow getting moving for the day, but she ended up being a complete trouper by remaining in happy and energetic spirits through the day. 

Her appointment time was at 2:30 this afternoon and we were instructed to give her a dose of Benadryl at 2:15 to make her really tired for the appointment.  I was quite worried about her falling asleep in the 30 minute car ride to the neurologist office, but a little Princess and the Pauper on the DVD player kept her alert the whole way. 

The hour long wait in the neurologist’s office was another story though.  We read books, looked through all the non-kid magazines and picked out yummy looking food we wanted to eat, we marched around the office, we colored, but she REALLY struggled to stay awake at this point.  Finally they finished up with the girl who screamed most of the way through her EEG (hence the long waiting time) and it was time for Ellie’s turn.  

We had prepared Ellie by talking about the procedure and showing her pictures of the wires and such, but in the end I don’t think Ellie cared much about anything except about getting to lay down on the bed in the room.  She was completely compliant and quiet while they attached the dozens of wires and I think the technician was relieved to have an easy-going child after the super high maintenance child right before her.  

While lying there on the bed, it took every effort to keep her awake until all the wires were attached. She had a couple of visible seizures while Renae (the technician) was working on her.   I’m used to being the only one who notices the “episodes” most of the time, so it was interesting to see how tuned into them Renae was.  She even noticed them before I did a couple of times.   

It was my biggest worry through all this that she wouldn’t have any seizures at all for them to see or measure and that we’d be left hanging with an uncertain diagnosis, so I was relieved (I know it sounds weird) when she had three during the half-hour long EEG. 

She was sound asleep in about 2 minutes after the test started and she ended up having two of the seizures in her sleep.  We won’t know anything more about the results until after the neurologist evaluates them, which could be 1-2 weeks. At this point, though, I am happy that the EEG was able to get some good readings that will help them with our diagnosis.  (NOTE:  The EEG results confirmed that she was having petit mal [absence] seizures)

Right now her MRI is scheduled for October 27. (NOTE:  She already had the MRI last week and the results were normal).  We were a little frustrated with the long wait, but we’re hoping the doctor will try to use some pull to get it moved up, if possible.  When I got online to find out if that kind of wait is normal, I did learn that with socialized medicine in the UK that it usually takes 18-22 weeks to get into a neurologist appointment with new seizures and another several weeks for an MRI.  I pray that health care in the US is not going down that path.... (sorry for the political view thrown in there)

Thank you for your prayers in our behalf.  I oscillate between between calm and optimistic about everything and worried sick about what the future may hold for Ellie.  Best case, she still has the MRI, more EEG’s, and medicines to take for several years at least.  Worst case....  I don’t really want to talk about that.  (NOTE:  We're relieved that we don't have to worry about worst case anymore.) 

Love you all!

Lara

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I hope I'm not boring you with all my Ellie posts.  It's such a big part of our lives right now though, that it's hard not to.  Hopefully in the next few weeks we can get back to more non-epilepsy related posts here. 

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Our Journey in Homeschooling

Our homeschooling journey started when I felt very strongly that I needed to homeschool Spencer for 8th grade.   We did it just that year and then he went off to high school the next year, refreshed and ready to work hard.  I didn't necessarily have the same strong impression to do it for Cami as I had for Spence, but she really, really wanted to do it and over the course of that year, we decided that 8th grade was a perfect year to pull all the kids out.  Thus our homeschooling for just 8th grade tradition officially began.   It's been a beautiful way to reconnect with each child before they head off to high school and I like that the only thing on the high school transcript that we have to worry about that year is math, and other than that they can each have some freedom to explore and learn about things that interest them.   

When Ellie started having seizures when she was in kindergarten, I wondered many times if I should just pull her out and homeschool her.  She was so tired from the medications and the seizures were so frequent that they interrupted her learning time at school.   I was frankly rather surprised when I prayed about it that it wasn't the right thing.    The reason for that answer became very clear the next school year, though,  when Spence was diagnosed with leukemia and our lives were 100% turned upside down.   I've often been grateful for the loving and steady support we had from the kids' elementary school during that crazy time and, in hindsight, I can see that having them in school was absolutely the best place for them to be at that time.   

Sometime during Ellie's 2nd grade year, though, I had the impression that I needed to consider homeschooling again.   Her medication side effects were less than they had been, but her seizures were as frequent as ever and they were starting to affect her socially too.   We met at length with the school staff that year to find solutions, but ultimately we realized that there was no amount of "special education" she could receive in a school environment that would ever suit the needs of our intelligent, well-behaved child who had frequent, but quiet seizures.  Basically, because of her intelligence,  she'd find strategies to fill the gaps in instruction that she'd missed during her seizures, but still it wasn't enough to keep her from struggling.   But because she didn't struggle enough to make her work fall below grade level expectations, she didn't qualify for anything in the way of special education. 

Everyone at the school was actually great to work with and tried very hard to be accommodating, but  because a school is a school with hundreds of students and our one student had a rather unusual set of circumstances that caused her to struggle, they couldn't offer what she needed.   It was quickly becoming clear that Ellie was being set up to fall through the cracks of the educational system.  What she needed was  someone who could tailor her education to her individually, who could pause when she had a seizure, and help when she needed extra help.    She needed mom to be her teacher.  

We prayed and this time felt very strongly that we needed to pull out both Ellie and Adam.   Adam was a kid who was doing great at school and that answer frankly surprised us a bit, but looking back I can see that it was absolutely the best thing we could have done.    Homeschooling them  has changed the daily dynamics of our family in a big way, but it has been a blessing far beyond what we ever could have imagined.  

When I started homeschooling, we just approached it as a take-it-one-year-at-a-time mentality.  After four years though,  I think we're in it for the long haul.  It's changed us all for the better and the fact that Ellie still has seizures is only one tiny factor in our reasons to continue to homeschool. 

It's definitely been a windy journey to figure out the type of homeschooling that works for us, but after four years, we're getting there.    We've got a great network of homeschooling friends around us, the kids are working hard (without having meltdowns), and the rigor for all the subjects seems just right.  And I feel like we're finally really starting to reap the benefits that homeschooling offers--benefits like having the freedom to be able to travel and  the kids actually loving to learn (and not just checking boxes to get a grade).   

It really is a beautiful thing!  

What better way to study culture and architecture than to walk the streets of Venice and visit Basilica San Marco in person?

One of the best parts about living near DC is the opportunity for really cool field trips.
This was Adam at a class on the Constitution at the National Archives. They dove into documents,
learned about the different parts of the Constitution and what they mean in today's world, and
then went to see the actual Constitution.  How cool is that?   

Here is Ellie at the same class at the National Archives.

We also recently attended a class all about birds of prey.  

We have a co-op for Biology this year and it's been the perfect blend of academic rigor and hands-on experimentation. 

We extracted DNA from peas and examined it under a microscope.

We've also examined cell structures under a microscope (Adam was very proud of this picture)

We also have a AP US Government co-op class where they dive into the history and workings of the US Government.
I don't have many pictures of it, but this day Adam, his friend, Abby, and his class went downtown to a
National Lawyer's Convention where they got to hear national politicians (Ted Cruz, Nikki Haley, etc) sit on panels and discuss controversial topics that America  is facing right now. Again, how cool is that?!

A Day at a Time

About five years ago, my brother talked me into starting a blog.  He convinced me of how cool it would be to be able to share pictures and stories with loved ones far away.  They could look at the blog when they felt like it instead of reading emails which would get looked at and forgotten.   We still had dial-up internet at the time and I was hesitant, but eventually decided to give it a try. 

It took publishing approximately two blogposts before I was 100% hooked.  I loved the way the photos and the words interacted together.   I loved that it was mess and cost free, unlike the scrapbooking I'd been doing up to that point.  I loved the fact that I had a way to share stories and photos as they happened.  And most of all, I discovered that I loved having writing and photography as creative outlets in my life. 

My blogging has changed over the years.  I've gone from "here's what we did today", to trying (mostly unsuccessfully) to be humorous, to starting the recipe blog, to sharing  parenting advice, to reminiscings of old-times, and to publishing FHE lessons.   Over the years, my blogging has become an important part of who I am. 

Then one day about a year and a half ago our little Ellie started having absence seizures.  In light of the current health issues our family faces,  it all seems so insignificant now, but at the time it really rocked our world and my thoughts on blogging.    For several months, the medications made her fatigued and grumpy and I had to pick her up early from school more often than not.  Suddenly she was a shell of the happy, talkative little girl she'd been before and we were sad as we watched her struggle.  (*see below for an update on her seizures)  

It was her diagnosis and wanting a safe place to share about it, that got me to split this blog off from the original.   Basically I wanted free license to be able to post boring updates on our family again and not feel like I was letting down all the people who didn't know our family who were coming to the blog for the lessons and articles.   

That was when, "A Day at a Time" was born.  I transferred all of the family related posts here and started fresh.  And it proved to be just what I needed.  Posting lessons and articles on the other blog has since fallen by the wayside, but it worked wonders in that I had a place to blog about our family again without trying to impress anyone.   My posts are often boring or silly, but they are 100% me and they are therapeutic for me to write.  Yearly we print the posts into books and have a wonderful family scrapbook/journal that will be a treasure for many years to come. 

When we learned of Spencer's leukemia, we briefly discussed starting another blog that would be just for him, but in the end we decided that since this was all a part of our family's journey and goofy blog address notwithstanding, we wanted it all to be in the same place...here on our family blog.   

Little did I know that day when I created this new family blog, shortly after Ellie's epilepsy diagnosis, how apt the title,  "A Day At a Time" would be.   Although we'd felt the wisdom contained in the title back then,  it's taken on an even deeper meaning for us the last few weeks. 

When I get overwhelmed or emotional, it's invariably because I've let my mind wander to our uncertain future.  But when I focus on being present in the here and now,  I feel gratitude for the beauty that surrounds me. 
                                    
The simple joy of being all together as a family for a few hours each Sunday for our traditional dinner at the hospital...


The joy of hearing my children's laughter ring through the halls of the hospital... 


And the joy of my teenage boy feeling well enough to tease me, the nurses, and his siblings (and aim a heparin shot at me)...



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Update

Spencer is  a little more tired than usual, but is still feeling and eating well. 

As per the new Sunday routine, the priest quorum met with Spence the third hour of church, taught a lesson, and gave us the sacrament. 

*Ellie still has many seizures a day, however they are now reduced in numbers and length.  The medication side effects have mostly diminished.  We feel like her seizures are in as good a place as they can be  and we are grateful for a patient neurologist who is working hard to find the right balance between controlling the seizures and minimizing the medication side effects.  With her diagnosis of Childhood Absence Epilepsy, it is likely that her seizures will be an ongoing issue for several more years before she outgrows them (hopefully).      

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"The happiest people I know are not those who find 
their golden ticket; they are those who, while in 
pursuit of worthy goals, discover and treasure 
the beauty and sweetness of the everyday moments. 
They are the ones who,thread by daily thread, 
weave a tapestry of gratitude and wonder throughout 
their lives. These are they who are truly happy."
                                                          Dieter F. Uchtdorf

Freaking out....

Memorial Day weekend is usually a weekend my kids look forward to with eager anticipation.  In addition to signaling that there are only a few weeks of school left before summer break, almost as exciting....it's also when all the outdoor pools open for the summer!   Usually I really look forward to taking the kids swimming on an almost daily basis, since it's one of the few activities the whole family enjoys.  This year, however, I can't help but be a tad bit freaked out about it! 

(see below)

Absence Seizure Definition

By Mayo Clinic staff Absence seizure — also known as petit mal seizure — involves a brief, sudden lapse of conscious activity. Occurring most often in children, an absence seizure may look like the person is merely staring into space for a few seconds.


Compared with other types of epileptic seizures, absence seizures appear mild. But that doesn't mean they can't be dangerous. Children with a history of absence seizure must be supervised carefully while swimming or bathing, because of the danger of drowning. Teens and adults may also be restricted from driving, riding bikes, and other potentially hazardous activities.


Absence seizures can usually be controlled with anti-seizure medications. Many children outgrow absence seizures in their teen years, though some may eventually develop grand mal seizures.

Good thing I just got a cute new swimsuit, because it looks like I'll be spending a whole lot more time in the water this year than I normally do.   



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Ellie

(I'm transferring this post over from my other blog...if you want to read the comments go there.)

In answer to your questions: 

• Ellie is having her MRI on Thursday, which was a direct answer to our prayers.  They'd originally scheduled it for October 27 and we hated having to worry for that long.    Because of her young age (and propensity for wiggling), the MRI has to be done under sedation at the hospital.  Her safety during the procedure is now the focus of our prayers. 

• Based on the kinds of seizures that she's having (petit mal) and the lack of other symptoms, the neurologist does not expect there to be any abnormalities with the MRI, but just wants to make sure. 
  
• Ellie has 15-20 noticeable seizures a day and the only way they are noticeable is if I'm in the same room with her and/or interacting with her.  The doctor estimates that she's having dozens upon dozens more each day that go unnoticed. Unless you were interacting directly with her, you may not ever notice one of her seizures, but all those seizures in a day in 10-15 second increments sure make for a lot of missed cognizance in a day for her.         

• Ellie is back to school this week.  The school is holding a seizure training session with all of the teachers that Ellie comes in contact with during a day.   They will be trained on how to notice the seizures and how to redirect her when she regains consciousness.  They will also be trained on what to do if she ever has a grand mal seizure, which although somewhat unlikely still, is more likely now that she officially has epilepsy.  

• Ellie has no idea why she's going through all this.  She thinks that a seizure has something to do with the little cough she had last week.  We have no idea how to tell her any more than that. 

• If Ellie is walking when a seizure occurs, she sometimes  clumsily and absently keeps walking, although she's totally unresponsive and unaware of her surroundings.  I'm very worried about her playing in high places (like the play equipment at school), but so sad to have to ostracize her in that way. 

• It's looking more and more like she has Childhood Absence Epilepsy, which is considered among the most mild and treatable forms of epilepsy.  Children often outgrow it in adolescence, although having epilepsy at all makes her much more prone to other forms of epilepsy later in life. 

• The doctor has prescribed a medicine for her, which she will start taking twice a day in very small doses.  We're a little on the anti-medicine way of thinking, but feel strongly that for Ellie's quality of life we need to be diligent with it.  It is our hope that side effects will be nonexistent or minimal.

• Your kind comments and prayers are very much appreciated.  :)

• Totally off topic, but, yes, I'm doing strange things with this blog (hence all the missing posts).  All will be revealed shortly. 

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Ellie: Fall 2011 Update

1.  A year past her diagnosis, Ellie still has numerous seizures per day.  The seizures are not as long or quite as frequent as before, but they are still there and still interruptive to her days. 

2.  Ellie's 1st grade teacher is wonderful, attentive, and very supportive of helping Ellie, but her class size is larger this year and I worry that she will be lost in the shuffle. 

3.    Her reading is right on par with where it should be, but she is struggling with numbers and math.  I think that her short, frequent seizures are enough to interrupt the flow which is so important to understanding numbers. 

4.  The neurologist is very cautiously raising the dosage of her Zarontin again.  Zarontin is historically the most effective medication for treating her type of seizure, but it's also the one she reacted so poorly to last year.  We're hoping that a year of growth and taking the medication in small doses will help her to tolerate it better this time around. 

5.  She still visits the school nurse on an almost daily basis, but thus far she has been content with a quick rest or ice pack, rather than having me come pick her up.    I think that having a good friend (Madilyn) to sit with on the bus may be a contributing factor for her desire to stay at school.   I'm not complaining. 

6.  Ellie is starting to show strong interest in learning to ride a bike, but because it is not a safe activity with her frequent seizures, we are trying to discourage her interest, as well as minimizing her exposure to it.  It feels wrong to discourage a normal step toward independence, but since all it would take is a five-second seizure and a swerve into the street to cause disaster, we are hoping that she will just sort of "forget" about wanting to ride for now.    Sadly, I think Adam is also going to be caught in this anti-biking mentality and will likely not have biking be a very important part of his life either. 

7.   Ellie is still talkative and open about her seizures and will tell anyone who cares to listen that she has "caesars".  Of course her friends don't really understand what it means, but I think she's surprised a few adults with her openness. 

8.  Ellie wants me to reassure you that she's read all of your perplexing fashion questions and is happily in process of preparing to share her sage fashion advice with all of you.  Stay tuned. 

Seizure First-Aid

Tonight I've put aside the light-hearted Christmasy post that I was working on, so that I can share with you some important information that is very near and dear to my heart.

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On my way into the courthouse this afternoon for Spencer to attend his official driver's licensing ceremony, Spencer and I noticed a woman on the sidewalk in the throes of a "grand mal" seizure.  I could see from a distance that the people near her did not seem to know what to do, so I ran to see if I could help.  

Although Ellie has never had a convulsive seizure, because of her epilepsy she is significantly more likely than the average person to have one someday and we have all had seizure training just in case.    This experience was my first time ever witnessing a grand mal seizure, but I was glad I was there, because it was very clear that I was the only one in the group that had gathered around her that had a clue what to do.   Someone was protecting her head, which is hugely important, but she was still on her back and struggling to breathe as a result.    As soon as we flipped her to her side and took out the object that someone had placed between her teeth, her breathing immediately evened out.  

In a couple of minutes she was fine and the ambulance arrived just as Spencer and I had to rush to the courtroom, where I was shaking and on the verge of a melt-down...partly from the adrenaline and partly with worry for Ellie and the seizure we pray she never has.   After gathering my wits,  I got to "enjoy" sad videos and scare tactic presentations geared for the room of new drivers.  Afterward they presented us with his license and we had a much calmer trip home. 

Later, after processing all that had happened, I knew that I had to write this post tonight.....for Ellie and for all the people out there who also have epilepsy or even for those children who have febrile seizures.  

Please take a few minutes and read through these steps about what to do if someone has a seizure.  If you have a bit more time, watch the video as well.   In just a few minutes, you can go from being the helpless bystander to the person who knows what to do in a potentially frightening situation.  

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SEIZURE FIRST AID

1.  Clear the area around them and protect their head by holding it slightly upward or putting an item of clothing underneath it to prevent them from banging their head on the ground.

2.  Roll them onto their side. 

3.  DO NOT place anything in their mouth (no food, no drink, no objects)

4.  Call 911 (unless you know that they have a history of seizures or in a person with a history of seizures if the seizure lasts longer than 5 minutes.)

5.  Stay and help them to remain on their side with their head protected.

6.  Note the approximate length of the seizure for emergency personnel. 

7.  Calm the person when they awaken, as they will likely be very tired and very confused.



This is the video we watched as a family to learn what to do.  Skip to the 5:00 minute mark to get to the important part.  Watching the video took a lot of the fear out of the whole experience for me, because I could visualize what to do and be less frightened by the actual seizure. 

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Ellie has "petit mal" seizures (officially called "absence" seizures) and they do not require any other first aid than making sure that she stays safe while she is non-responsive. 

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Ellie's improving!!!

More than a year after her diagnosis with Childhood Absence Epilepsy, I am pleased that to be able to tell you that Ellie is finally seeing some improvements!

After the unpleasant side effects she experienced during the first few months of taking the medications, the neurologist had been approaching her care with caution.   Finally in November she was having so many seizures per day (every couple of minutes),  that we felt like we just had to be more aggressive with her treatment and hope for the best.  

With our negative report and her teacher's worry that her seizures were starting to interrupt the class (because she had started clicking her tongue during the seizures),  the neurologist made a plan to double her dosage over a period of a few weeks.  We were a little tentative about the big increase, but knew that we had to give it a try...for Ellie's sake. 

Much to our surprise, not only have the numbers of seizures reduced significantly, but she has also retained her energy and sprouted a creative/focused streak that we've never seen before.

It seems as though her brain is so thrilled to be interrupted so many fewer times a day, that she literally cannot contain her enthusiasm for expressing herself in creative ways.  For hours each evening she writes books...

makes her own dolls...

 transforms paper plates, boxes, and toilet paper rolls into beautiful creations... 

and even bakes her own pies...

All completely of her own accord.    

We know she still has a long path in front of her, but we're excited to see a side of her that's been hidden away for a while!    Yay!

The Elusive Happy Medium (an update on Ellie)

We're almost to the two month mark  in our unexpected journey into epilepsy.  It's been a crazy couple of months and I hope that in the end I can say that I'm a better person for them.    I'm learning first-hand that while her diagnosis of childhood absence epilepsy was probably the best one we could have hoped for in this situation, it still is (and probably will be for several years) an ongoing process to find a happy medium--a place we definitely haven't reached yet. 

The medication she is taking has effectively reduced the seizures from dozens per day to only a couple per day (that we notice), but in the process has sapped her energy and made her grumpy and clingy.  She's already on the lowest dose possible and in an effort to help reduce the negative side effects the neurologist has had us split her 6ml per day into 3 doses, rather than the 2 it had previously been.  For a busy (and somewhat disorganized) mom like me, remembering to dole out medicine 3 times a day is quite a feat, but I am happy to say we haven't missed a dose yet.

With the 3 doses per day we've definitely noticed an improvement in her energy level.  She is not dragging near as much as she had been, which is a relief.  Now, however, she has begun to have headaches which I just realized are another possible side effect of the medicine.  She has also been more irritable and moody.

Her follow-up appointment with the neurologist is in a couple of weeks and unless there is significant improvement in her energy and mood, I'm not sure that we can say that the benefits of this medicine outweigh the negatives.

There are two other medicines out there to treat this kind of seizure, although the one she's on is usually the first line of defense because it supposedly has fewer negative side effects than the others.  We're hoping that with her wiring, that maybe one of the others will prove more successful (or that she will adjust to a happier place sometime soon with her current medication).

I guess I've gotten fairly lucky in that out of our five kids, Ellie is the first one with special needs at school.  She was already one of my most distractible and talkative children, but combine that with her fatigue, irritability, and seizures and I'm sure she is not the teacher's favorite student this year.  It is my hope that once we find our elusive happy medium, that the teacher will see a little glimpse of the smart little sweetheart we sent off to kindergarten this year.   It would almost be funny if it weren't so sad when I go to pick Ellie up early from school almost every day,  looking in the "Student Sign-Out" book and seeing Ellie's name 3 or 4 times on every single page. 

Okay, enough with the negativity.  Tomorrow's post will be much more uplifting and until then here are a few pictures of Ellie modeling her new Medical ID bracelet.  They recommend that anyone who has seizures (of any kind) wear one,  but mainly it is for the medicine she is taking.  Apparently it negatively interacts on a moderate to severe level with almost 500 other medicines, including almost all pain-killers stronger than Children's Motrin or Tylenol and every cough and cold medicine in the universe.  I'm not a big medicine giver anyway, but I still dread the day she gets her first illness this winter knowing that there's no choice but to go without medicine.   

She is quite proud of her new jewelry and will happily show it off to anyone who shows any interest!  She will even tell you why she wears it. 

I thought about switching her bracelet to the non-bandaged side for the pictures, but in the end, I felt like it showed a little glimpse into her personality!  :)

We figured while we were engraving her medical issues on a medical plate anyway, that we may as well add in her allergy to penicillin as well.    Basically, without us saying a word, a doctor now knows at a glance that she has seizures and  can't have a sizable chunk of "normal" medicines.

Good thing Bandaids aren't a problem though! 


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Looking at a Seizure

A little update on sweet Ellie:

• Ellie is tolerating her new medication much, much better than her previous one.

• I love having our happy, energetic Ellie back in the house again.  I feel like the first medication made her act like I imagine a depressed 5-year-old would act.

• She is still having lots of seizures.

• We're in process of increasing her medication to a level that will hopefully control the seizures and not knock her out. 

• Before her epilepsy diagnosis, she had almost completely given up sucking her thumb, but when she started on the medication from hell, she started sucking it again in earnest...even more than she had before.  We just started a little  bribery program to get her to stop again.  After four days, I have to say that it's going phenomenally well.

• I love this sweetie girl and her new toothy smile. 

A few seconds after the first picture was taken, she had a seizure, so I took a picture (hopefully she won't hate me someday for publishing it).  

It shows a little glimpse at a typical seizure for her:  She stops smiling, her eyes flutter, and she smacks her lips like she's chewing.  She looks away and in this case her hands still gripped the plate, but they fell downwards and I had to catch the pizza to keep it from falling on the ground (the reason for the blurry shot). 

After about 15 seconds or so, she "comes back" and experiences a momentary confusion (hence the frown). 

In another few seconds she was smiling again.    If you didn't know what was happening, you'd find it all a bit odd, but you would probably just think she was distractible and tired.

Based on the time I spend helping in her reading group each week, I see that these seizures really do put her at a distinct disadvantage in the classroom.  She misses instructions, she loses her place in her work, and she seems noncompliant in group settings. Thankfully her teacher is much calmer and more understanding than the jerk of a teacher who yelled at her during a seizure last week.  Truly, kindergarten is probably the best grade for  this all to happen and my biggest hope, at this point, is that we'll have it mostly under control by the time she starts first grade. 


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The EEG

June 14:  After 6+ years of having dozens and dozens of absence seizures per day, the last few months Ellie's seizures have dropped to almost zero.   Even in Europe when our routines were off and she was often very sleep deprived, we hardly noticed any.   The neurologist was hopeful that she was finally outgrowing them (the normal course of her type of epilepsy).  This thought got us very excited and we started having grand visions of her having a normal EEG today and us starting to wean her down from her anti-seizure medication.  

Alas, it was not meant to be.   She still had at least two seizures during the procedure, which means that, yes, her medication is more effective than it's been in the past, but she still has childhood absence epilepsy and it's not time to wean her from the medication yet.  

<sigh>

After that it was time to go home and deal with the car.   Glen actually stayed home from work to help the process.    It was a looooooooooooooong day of ongoing car issues and other worries.   

In the meantime one of our favorite missionaries was in town visiting with his mom and asked to come visit.  We felt very honored that he would choose to come visit us and I was disappointed that I could not be home when he came.   

We love Elder Perkins!   

The evening  was one of extreme unpleasantness that I shall  refrain from recounting in this public forum.   Let's just say that it was rather hellacious and it, combined with my extreme lack of sleep from the night before, meant that I was not in my best form for dealing with it all.  

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Sick Days and an Ellie Update

(Note:  I wrote this post a week ago, but for some reason never finished it and got it posted.  Ellie is healthy and back-to-school now.)

Ellie has had a rough couple of weeks with illnesses.  First it was an annoying cough.  The kind that's just bad enough, I thought it would  interrupt her day at school, so I kept her home for a few days.  Then, a few days later, it was a stomach bug that kept her out for a day or two.  Then a few days after that it was a fever/respiratory symptoms that lasted for five entire days.  The poor girl was just worn out from fighting off illnesses for so long! 

Between all the school she's missed with her medical testing, medication side effects,  and now this last round of sicknesses...it's a really good thing that there is not a minimum attendance requirement for kindergarten or we'd be in trouble.  Thankfully, she's doing well academically and because there is not a minimum requirement,  she'll be just fine moving up to first grade next year.   

In the meantime, I'm really trying to soak in these bonus days with her at home with Cami and me.  It's been so sweet to see how Cami's and Ellie's relationship has really strengthened through this year


 

And while we're on the topic of Ellie, I'll do another little update on her seizures. Early in our epilepsy journey, our pediatrician told us that treating epilepsy is more like an art than a science, and after nearly six months in the trenches, I couldn't agree more.   The doctor recently asked us to switch her medications over from generic to  brand name.  It's more out-of-pocket expense for us, but we do  feel like it's made a small improvement in the numbers and length of her seizures.  Despite the improvements though, it still feels like we've got a ways to go before controlling them.     The neurologist recently has recommended that we try to increase her dose of the original-horrible-side-effect medication, since it is supposed to be best medicine out there for her specific type of seizure.  We're slowly increasing that again and hoping that her body will adjust better to it this time.  

On another note, it is interesting to see how Ellie has become more aware of her seizures.  She cannot feel when they're happening, but she can often tell when she's had one based on people's reactions to her.  She'll come home and tell me that she had seizure in music class or when they were lining up to go outside, or something of the sort.  I'll ask her how she knows that she's had a seizure and she'll tell me it's because everyone else was lined up and she didn't come and people were calling her name.   Or that they were playing hot potato in music class and she caught the ball and held on to it too long and everyone was saying her name.   One day she even came home really excited because she hadn't had a seizure all day.  When I asked her how she knew that she hadn't, ironically she immediately had a seizure, then proceeded to tell me it's because she did everything she was supposed to right away and no one had to call out to her.  I'm impressed by her matter-of-factness and her powers of observation, but I sure hope we can get these under control before next year when her peers will start to notice the episodes even more. 


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An Open Letter to Health Evangelizers Everywhere

Yes, I'm talking to you.

The one who loves to post links on your facebook page about how some food or medicine cures or causes cancer. Or the "friend" who hadn't said boo to me in 20 years and felt the need to write me an impersonal note--not even taking the time to learn Spencer's name-- about what quack remedy I should use to cure his leukemia. Or the friend of my sister’s who in all seriousness told her to stop using antibiotics for a serious infection and rub oils on her feet instead. Or the regular comments, which I delete immediately, I get on any blogpost that mentions Ellie's epilepsy that tells me about which snake oil will cure her from all her seizures.

Can you please stop before you post next time and try to look at this from the other side of the coin first?

I hate to rain on anyone’s happy parade, but despite people's best efforts bad things can still happen and your constant ravings about how healthy/happy/perfect you and your kids are because of all the good things you're doing for them are hurtful to those of us who have kids who are not as fortunate as yours.

I love my kids just as much as you love yours and have always done what I thought was best for them. I breastfed each of my kids for 12-18 months, avoided giving them unnecessary medications, made their food from scratch, avoided artificial dyes and flavorings, and took them to the park instead of letting them play video games. And yet I still had a kid who was unfortunate enough to have cancer. Another one has uncontrolled seizures.

Did we cause their health ailments because I didn't see your barrage of well-meaning trendy health information soon enough?

NO! And your constant insinuations (even indirectly) that I coulda, woulda, shoulda done something different is counterproductive and hurtful. Do you think I don’t beat myself up enough wondering if we did something wrong to cause their ailments?

You have absolutely no idea what it feels like to be told that your son had a 25% chance of surviving the next five years with the best medication the world has to offer and yet you have the gall to tell me that chemo is unnecessary and that if we simply cut meat and dairy out of our diets that he would be healed. Feel free to go that route when someone from your family is on death's door, but please don't put that judgmental crap out there as fact and expect people to jump up and down with joy at the "good news" that if only they were as good a parent as you they could have been spared the pain of watching their child suffer.

And don't even get me started on essential oils! I actually have some and think they're great for minor complaints, but there are far too many zealots, most of whom also happen to sell them, who shove the religion of essential oils down the throats of anyone who crosses their way--especially people like me who have families with visible health issues. They proclaim miracles at every turn and then try to peddle me their overpriced wares. Natural or not, they did absolutely nothing for Ellie's seizures and my sister has a friend who is blind in one eye and undergoing a corneal transplant soon, because she ignored her doctor who prescribed something for a minor eye infection and opted to use essential oils instead.

I am not so naive as to not realize that the medical profession in this country is riddled with problems, but I simply do not believe that there is a cure-all for anything and to coin an overused, albeit apt phrase, that anyone who tries to convince you otherwise is probably selling something.

For the record, I am one who loves to share good news as much as the next person, but I personally believe that other people's health choices should be respected and that evangelizing should be limited to matters of eternal salvation.
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"And as Jesus passed by, he saw a man which was blind from his birth. And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him."  

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