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Luv'N Lambert Life

Luv'N Lambert Life

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

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Epilepsy Mom

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

June 20, 2017 by Dana

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.


Filed Under: 2017, absence, complex partial, Epilepsy, epilepsy blog, epilepsy blog relay, Epilepsy Mom, epilespy awareness, family, Life with Epilepsy, living with epilepsy, seizure, tonic clonic

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

May 11, 2017 by Dana

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

Filed Under: 2017, alternative medications, complex partial, epilepsy and essential oils/natural treatments, Epilepsy Awareness, Epilepsy Mom, epilepsy parent, essential oils, no miracle cure, seizures, treatments

God’s Nudges {Epilepsy Awareness}

February 22, 2017 by Dana

Sometimes God alerts us to dangers that may be happening around us.  I’m always thankful for these little nudges that let me know when I need to pay extra attention.  Especially when these little instances have to do with my children.

Last night, I tucked my kids into bed.  I said their prayers with them and kissed them.  Then I went to take my bath as usual.  Shortly after, I began to relax, I heard Laycie cough.

It was an unusual thing, as once she’s out, she’s usually out for the night.  But last night, I just felt different and I knew I should check on her.  So I did.

She was asleep in her bed, snuggled in but something told me to wake her anyways.  When I did I found she had the paths of tears coming from both of her sweet eyes.  As she opened her eyes to look at me, I saw her eyes were red.

She had no idea why I was waking her.  She didn’t know she had coughed.  She didn’t realize she had been crying.  I asked was she okay and she responded but her answer didn’t make sense.  I’m not sure if she had been dreaming or if this incident was seizure related.

This is the life of Epilepsy.  Outwardly, you see a child who appears normal.  A child who plays with her siblings, sings, jumps, runs like normal.  But beneath the surface the normal child ends.

From my experience, I have no doubt this was seizure activity for Laycie.  Her emotions, her responses on waking, her movements all point to something being “off” for her.  It wasn’t a seizure itself but activity in the brain that can lead to a seizure if not recognized and paid attention to.

Sometimes we miss these small signs that the Monster is nearby.  We don’t always catch those little things before the big ones happen but they are important to learn and to recognize.  By catching her small responses, I am able to snuggle with her to calm her.  I am able to see to it that she rests a little more, sleeps in and takes a nap if she needs it the next day.

Sometimes just simply laying beside her and holding her can help her drift into a deep sleep that allows her tiny self to reset.  This simple reset can help keep her from having a major seizure and that’s always the goal.  If she’s restless, we can find a relaxing activity which for Laycie is usually just being held and shown love from Mommy.  I can also apply our essential oils, either our frankincense roll-on or our lavender, to relax her and help her drift into sleep again.  Just these simple things can help.

There have been so many nights that I have laid awake in the last 14 years as a seizure Mom simply listening to my children breath.  There have been so many days when I have watched my children like a hawk judging what for us is seizure activity and what isn’t as well as what’s different for this child versus their sibling.  Epilepsy manifests into each individual person differently so it’s important to learn these small points, as well as the larger triggers for yourself or your child.  Learning their personal quirks and triggers can help you to stop the onset of a major epileptic event for that individual.

And always pay attention to those little God nudges.  Don’t second guess His reasons to alert you.  Go seek out what it is He wishes to make known to you.  You simply never know when one of those nudges may save your life or that of someone else you love.

God bless,

Dana

Filed Under: 2017, Epilepsy, Epilepsy Awareness, epilepsy blogger, Epilepsy Mom, Life with Epilepsy, living with epilepsy, seizure life, seizure monster, seizures suck

Balancing Life {Epilepsy Awareness}

July 14, 2014 by Dana

It has been a year since Jackson’s battle with Severe Involuntary Breath Holder Spells with Epilepsy began.  Time has passed quickly, yet there are days when I still feel suspended in time.  This year has been hard on our family but we are still moving forward.

It’s hard for me to believe that a year has passed since this journey began for us.  I can tell you that each time you find out your child has some disorder, it sucker punches you deep in the gut.  Having multiple children with health issues doesn’t make it easier and you genuinely hope with each child that they will be healthy and “normal” like children should be.

We are finally at a point in our lives where we are able to breath again and are finding balance.  Jackson’s last medicine increase has his breath holding spells controlled for the most part and seizures have decreased with the decrease of IBHS episodes.  I could not be more thankful for this reprieve no matter how short it may be.

When you have children with disabling health issues, it becomes hard to function and plan your day to day activities because you do not know what to expect or even how to plan since you cannot guess when a seizure or spell will happen to them.  Events get cancelled, schoolwork is put off, living becomes second to surviving.  This has been our life for the last year.

At this stage, I’ve learned that seasons are short and each quiet period must be packed with catching up on the things we’ve had to put off.  Housekeeping is done in these time periods, restoring balance to the home so that we are ready for the next unsteady path.  Schoolwork is also done during these times so that when needed breaks come we do not fall behind.  Life and living come first for a while and surviving does become second even for a brief time.

After living this year surviving, we are ready to live life again and move forward, hoping the days remain balanced and settled for a while.  Whatever happens, I will take what I can get and enjoy these moments while we have them for they are gone all too quickly.

Filed Under: 2014, Children with Epilepsy, Epilepsy, Epilepsy Awareness, Epilepsy Mom, IBHS, living with epilepsy, surviving epilepsy

My Heart, My Soul is Angry {Epilepsy Awareness}

May 1, 2014 by Dana

My heart aches.   It’s been a long time since I have blogged anything about our Epilepsy.  I have closed it off and tried to ignore it’s existence but this week the Monster has made sure I know he’s there.  It’s been a long week and it’s not over yet.
Three seizures in three days for Jackson.  Two mild and one very big one that I honestly questioned whether or not it was going to stop.  I want to break.  I want to cry.  I can’t because Jackson needs his Momma strong.  Winston, Emmalee and Laycie need their Momma strong.

These seizures are becoming the norm in our family.  They were already an integral part but now they are a prominent, daily feature in our life.  I hate it.  I hate they exist.  I hate they happen every day.  I want to scream at this monster to just go the hell away, to leave my baby boy alone.  I want to scream at God to make them stop.  
Sometimes I whisper it — I know He hears my soul pleading.
I beg Him to stop the seizures.  I beg Him to heal my babies.  I beg Him to just listen, just take it away and make it all stop, to give my sweet baby boy the normal, seizure free life that he deserves.  To give my girls the same.  He hears me but still we fight this battle to which we have no control over. 
I may never know why. I am not meant to understand His logic, His reasoning behind the Monster’s attacks on my family.  Sometimes I feel like it’s just a game but I know there must be some purpose, some greater reason that I just cannot see.
My heart, my soul is angry.  He knows it and yet He still loves me.  That’s the way it is.  I try not to be angry and not to take my anger out on Him.  Yet, I know God is there – waiting.  He’s waiting for me to break, to come to Him so He can heal the hurt and pain that only He can.  
He’s waiting for me to share this story, for others who suffer like me.  To share it for other’s who watch their babies suffer with this damned disorder daily, just like mine do.  I know this is my purpose, yet sometimes I fight it.  I don’t wish to be a seizure Momma, yet here I am.
And then the words flow, much as they are tonight.  I feel led by God to share, to spill my heart and bare these wounds that haunt me.  When I rise, I stand strong again, in Faith, Love and in Grace that is given only by Him.  
I am undeserving but oh so thankful for His Grace, for His Love and for every single minute that I am blessed to love my babies on this Earth and beyond.  I cannot imagine this world without them, though I know they are only gifted to me for a specific amount of time.  I pray it never be cut short, that I am able to outlive them and they live long, seizure free lives.  I know that may not happen but I pray it does, like most Momma’s do.
I just want the Monster to stop – to go away and let my babies live happy, long lives full of Love and Faith, to be able to fulfill their dreams and wishes without convulsions and pain.  Maybe one day. Until then, I will patiently wait and continue to pray and have Faith.  It’s all any Momma can do for her babes.

Filed Under: 2014, anger, blessed, child, Children with Epilepsy, Epilepsy, Epilepsy Awareness, Epilepsy Mom, faith, fight, God, grace, seizure

It’s the Simple Things {Epilepsy Awareness}

November 11, 2013 by Dana

It’s the little things you take for granted daily when you have a child that has no disorder.  The every day things for a normal child can be a sign of something more for a child who has a disorder.  The simplest things that the every day parent takes for granted mean the world to a Momma like me.
As an Epilepsy Momma, I can’t allow my children to go beyond my reach for long without worrying about a seizure in one of my children.  I cannot allow my children to become upset and discipline isn’t an option either as spanking or even the simplest time out can lead to a seizure.  Playing outside becomes a concern because heat and even cold can exhaust a child, make them sick and both of those things may lead to a seizure.

As an Epilepsy Momma, I’ve come to appreciate the nights when we are up late as time to love and snuggle but I also know how extremely important it is for my babies to sleep as much as possible on a schedule to keep this monster in control.  I’ve learned to enjoy play but keep it calm and relaxing, or change the pace as needed in a day.  I’ve learned to limit activities to things that don’t contain flashing lights, or long periods of extreme action as these often lead to seizures for my children.

As an Epilepsy Momma, I’m unable to leave my child with just anyone.  I cannot allow the neighbor to take my children for an hour or two.  I must make sure my family and friends know my child’s disorder, know what action to take if a seizure happens, know how to administer emergency medications just in case.  Honestly, it’s simply easier not to even leave my child because of all of these things.  
Because of this, I am often called overprotective and overbearing of my children by the “normal” Mom’s.  Those who have special needs children know that I’m not overprotective, I’m simply a Mom of a child with a disorder.  
And this is the life we live.  These simple things, things that are daily taken for granted are things that affect our daily lives.  I am an Epilepsy Momma.

Filed Under: 2013, awareness, Children with Epilepsy, disorder, Epilepsy, Epilepsy Awareness, Epilepsy Mom, living with epilepsy, normal kids, Special Needs

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