Luv'N Lambert Life

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

Epilepsy Awareness

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

No Miracle Cures {Epilepsy Awareness} {Epilepsy and Essential Oils/Natural Treatments}

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As a Mom with Epilepsy, raising children with Epilepsy, I try my best to treat my children as naturally as possible with as little medications as we can have.  This has been a huge challenge to do and it’s taken me a lot of personal time and research to find what does and doesn’t work for us.

Truth is, there is no miracle fix for this disorder.  I wish there was.  There is no easy self-remedy.  There is no exceptional hidden method that will heal, prevent or change this for you or your child.

I cannot tell you what to use for you or your family.  I cannot suggest any method to make this go away.  I can only share with you what has worked for us.

There are many alternative treatments available for treating Epilepsy.  There is also medication which sometimes is the best thing you can do for yourself or your loved one. Medication is always our first choice for treatment but when medication alone didn’t work, I began to research alternatives which lead me to create the Facebook group, Epilepsy and Essential Oils/Natural Treatments.

In our group, I share what things I find online that I have personal found helpful or I think others may find helpful.  Many of these treatments I have not tried myself but I do see others in various Epilepsy groups who may have given it a try.  Sometimes the alternative treatments work and sometimes they don’t.

You see alternative treatment is just like medicine.  What works for one person or family will not necessarily have the same results for the next person or family.  We’re all different.  We all metabolize medications, herbs, essential oils, etc differently.  Therefore, all medications and alternative treatments are trail and error.

But don’t give up hope that you will find something that helps your loved one or yourself.  There’s always a chance that the one thing you try helps you have a better life.  There’s always a chance that you will discover that “miracle” treatment you need for your loved one.

For us, that was Essential Oils.  When my son was medication resistant Essential Oils gave us back a small part of normalcy and allowed him to get through his seizures with less stress.  It wasn’t a 100% fix for him but it was hope and a small blessings none-the-less.

The one thing I have learned on this journey with Epilepsy is that we are the best researchers and advocates for our loved ones but we must have a solid, trusting relationship with our neurologists as well.  I listen to their advice just as much as I follow my own gut on this.  And it has led to us being able to find stable treatments for my children and myself.

Do your own research as well.  Follow the instincts you were born with.  Search until you find the answers you seek.  If you feel strongly there’s a better way, then you’ll usually find there is.

Many blessings,
Dana Lambert-Hodge