Luv'N Lambert Life

A blog about living with Epilepsy, IBHS, Homeschooling and so much more

Epilepsy

My Momma Heart Is Broken {Epilepsy Awareness}

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My Momma heart is broken.  
Just when I thought maybe, just maybe Laycie could stop taking medication, that her seizures were possibly controlled, that she’d been showing no signs of the Monster, that Monster comes and shows his ugly face again.  We were settled and content and hopeful.  We’d let our guard down.
That’s the thing with the Epilepsy Monster: he comes when you don’t expect it, when you get comfortable, when you let your guard down, when you start to feel safe again.  It was my hope that my baby girl would not be on seizure medications forever.  Every day, that hope goes a little farther away.
Laycie is almost 10.  She’s had seizures since she was 4 months – exactly to the day.  They have not been kind to her.  
Her first seizure was a tonic clonic.  She went through multiple testing in that first 3 days after it happened.  Everything normal.  She was placed on Keppra and we were sent home.  
2 weeks later, at 4 1/2 months old, she went Status Epilepticus.  She had a 13 hour, relentless seizure that I thought would never stop.  9 tonic clonics and over 20 petit mals: we lost count at some point during the day.  I honestly thought I would not be bringing my little girl home that day.
Since then, her life has been filled with doctors, and blood work, multiple medications, therapy and more.  We’ve are thankful for the most part that we’ve been able to establish some control but even that is not 100%.  There are no guarantees for anyone who has this disorder.
For the last year, things have been going well.  We’ve seen very little activity.  We’ve had no partial or full seizures.  We had hope that maybe this was over for her. 
Yesterday morning that all changed.  She came to sleep beside me early in the morning, as is our tradition and a short while later I woke up to a rhythmic thump of the bed.  And I knew immediately we were not done with this Monster.  He was back again to show me that my hope was useless.
Laycie, thankfully, did not feel the seizure.  It was a complex partial centralized in her lower half.  Her legs shook and it lasted less than a minute.  She slept through the entire event and woke up her normal, sweet self.
She suffered no complications from it.  She felt fine all day.  She played, ate and did everything normally.  I’m thankful since we never know how things will effect her.
This morning, she slept beside me again.  No seizures but she was extremely restless.  This tells me her body is fighting and she’s not getting the rest she needs.  She’s argumentative and challenging today.  She has no idea why but I do.  This is the other side of Epilepsy.
So now we wait, we hope and pray.  But I face the truth: she may never outgrow this.  It may never go away for her.  
This has been our life for many years.  I’m used to it.  It’s not new.  But the hope is dwindling every year that at some point she won’t have doctors appointments, and scheduled EEG’s each year, or blood work every visit, and there’ll be no more medications to keep this Monster in control.  
It was my hope that one day she’d get to live a normal life.  One day she’d not have to do these things.  One day, she’d be okay and we wouldn’t have to worry so much.
Today though, we still fight the battle.
Until next time…

You Are Not Alone {Epilepsy Awareness}

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One of the things I love is coming to my blog and seeing which of my posts are popular.  Most of them are our Epilepsy posts.  When I began blogging, I didn’t intend to write about that aspect of our lives but I wanted others to not feel so alone in this journey that we’ve lived with now for generations.

I’m lucky.  I have generations of family who’ve had Epilepsy, who I can relate with.  Not everyone has that.  Most of the families I’m in contact with daily don’t have anyone they know that has Epilepsy and they often have no knowledge of Epilepsy itself.

Now it’s not lucky that we’ve had to deal with seizures for generations on generations.  This is a mean disorder that holds no kindness to it’s victims.  But I have history to compare to, especially for myself and my children.  I know what I’ve lived with.  I know what they’ve lived with and how it affects each of us.

I have 3 children with Epilepsy.  I’ve been to every appointment with them on this.  I’ve asked questions, had medications changed and adjusted, address dietary issues, made thorough notes about each type of seizure we all have.  I’ve taken on this part of parenting willingly because if I didn’t, who was going to?  But more than that, God equipped me to do this.  He knew when He chose me I could do it, even when I questioned.

I’ve been through the ups and downs of this disorder as a Mother.  I’ve explained as much as I can to my children when they ask why this happens to them or why they need medications, or why they need an MRI or an EEG, why we have to stay at the hospital this week.  This is our life.  This is what we do.  Epilepsy isn’t a choice but it is our life.

When you’re feeling down about Epilepsy, remember to look up, to pray, to allow yourself peace and grace as a parent.  Don’t beat yourself up.  There’s nothing we can do to change the fact we have this disorder, nothing we can do to change it.  We accept it and move on to help our children deal with their days better.

It’s been a while since I posted about Epilepsy.  It’s something I try to ignore some days but it’s always there.  When I least expect it, it will rear it’s ugly head and remind me it’s still here lurking in the sidelines.  And then I remember there are others like us who also deal with this.  I pray our blog helps you to deal with the day to day and know you are not alone.

Blessings,
Dana

Our Life With Epilepsy {Epilepsy Blog Relay 2017} {Epilepsy Awareness}

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This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!




This is our first time participating in the Epilepsy Blog Relay™ but if you’ve read our blog before then you know that Epilepsy is life for us. I turned 38 a few days ago and I have had Epilepsy since I was 3 months old.  I am a wife and a mother to four children, three of which have had some type of Epilepsy during their lifetime.  I have been an Epilepsy Mom for 14 years now.

My oldest, thankfully, does not have Epilepsy, though he does have struggles of his own.  He’s allergic to penicyllin and mold.  He struggles educationally.  He has sensory issues.

My second born, my daughter, was the first of my children to have Epilepsy.  She was 3 months old when she had her first seizure, 2 weeks following her vaccine series.  She continued to have tonic clonic, absence and complex partial seizures until she was 5.  At five she stopped having seizures and began having migraines instead.  At 14, she’s been seizure free for 9 years though she still has migraines occasionally.

My third child, my second daughter, began having seizures at 4 months, 2 weeks after having her vaccine series as well.  She also has tonic clonic, absence and complex partial episodes.   She is now 9 and has not outgrown her seizures.  As the years pass, our hope becomes less that she will outgrow them.  She has yearly EEG’s which show nothing and she’s on Lamictal currently after having allergies to everything we tried in the past.  She is mildly delayed due to an allergic reaction to Trileptal when she was an infant.

My fourth child, my youngest son, has a different condition.  He official diagnoses is Involuntary Breath Holding Spells that trigger Epileptic Seizure.  Involuntary Breath Holding is a common childhood disorder which becomes dangerous when seizures that follow last longer than the average 30 seconds to 2 minutes.  For my son, the seizures last anywhere from 10-20 minutes.  20 minutes is the longest we’ve allowed them to go without stopping them with emergency diastat medication.

Epilepsy brings many challenges in life.  I went from being the person that seizes, to being the person who watches their child seize.  Our family is rare in that we have 5 known directly descending generations with Epilepsy beginning with my great-grandfather down to my children.  My children are the first generation since my grandfather’s generation to have multiple siblings with Epilepsy.

Being a person who has seizures is hard.  Being a Mother of children who have seizures is harder.  I do not know what our days will bring as Epilepsy is not a predictable disorder.  Even though my oldest is not currently having seizures, it does not mean she never will again.  It’s a disorder we are always watching for, looking for even the smallest of events that may be a heads up for a larger event.

I don’t wish our life on anyone and yet I know our life could be worse.  I’ve been lucky in that we’ve never had more than one of my children (or myself) seize on the same day.  I call us blessed because I know this could be worse.  I see it in the Neurologist office and in my Epilepsy groups online every day.

I began blogging in 2009 and I wasn’t sure what this blog would be about.  It didn’t take long for me to find my purpose here though.  Sharing our life and our story about Epilepsy, our day to day challenges, things we go through in an effort to helps others who, like us, struggle to understand and live with this disorder.

When I began blogging there were not many Epilepsy Mom bloggers.  I can understand why.  This isn’t an easy thing to share.  When our families are seizing, then we’d just rather it go away and we’d rather pretend we’re normal and it doesn’t exist.  But the truth is, it does exist.  It doesn’t go away.  It’s always there, even when it’s not active.

There’s always the fear.  The fear that the day will end with a seizure or the morning will begin with one.  The fear that a seizure will happen in their sleep and you’ll wake to find them not breathing the next morning.  The fear that you’ll have a day full of too much excitement that leads to a week of seizures that are unstoppable.  The fear of Status Epilepticus and SUDEP.  The fear never goes away.

And you never forget.  You never forget how your child or your loved one looks laying lifeless and out of control.  You never forget the feeling of helplessness you as a parent feels.  You never forget the confusion a seizure creates.  And you definitely never forget the thankfulness you feel when your child or your loved on wakes up and comes around from the seizure’s effects.

Epilepsy life is hard.  It’s not a life any of us would choose but it’s one that we are forced to live every day.  We deal with the not knowing, finding hope and strength in whatever we can to get through it.  The Epilepsy community is a tight nit one because we each understand the challenges and triumphs of living with Epilepsy.

Epilepsy is our life and you can read more about it and how we deal with our day to day through the many other Epilepsy posts we have shared on our blog.  I promise there will be many more posts to come as we continue to share and work towards helping others understand what living with Epilepsy is like.  I hope our blog encourages you to share your own Epilepsy story with others.  Advocacy and Education for Epilepsy is one of the best things we can do for ourselves and our families.

May each of you be blessed,
Dana Lambert-HodgeNEXT UP: Be sure to check out the next post tomorrow with Danielle Daley on Facebook at https://www.facebook.com/Italianbabydollxox for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

Don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.