Luv'N Lambert Life

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

seizure

Unexpected {Epilepsy Awareness}

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A dear friend of ours passed away on Sunday and it just hits me how quickly things can change.  Her death was unexpected and she left behind a Mother who depends on her daily and a new husband with kids-in-love.  None of which could have imagined they would bury her today.

I’m in shock.  My heart hurts.  She was an Aunt to my own children-in-love, a sister to those I love.

God doesn’t promise us when our lives will end.  God doesn’t promise us tomorrow.  We are given only today, only these moments together until we are called home to the other side of things.

And it strikes me again, how quickly my babies could be gone from me.  How easily these seizures could cause their lives to be gone from here.  They are fragile and seizures are tough.  Their tiny bodies can only handle so much.

I pray for their lives every day.  I pray they will each see another day, here on Earth, here with me.  It’s selfish of me to want them to remain here with me but time is so short.

I want memories and I want snuggles, love from them, shared with them.  I want to embrace them every day.  I want to give them a lifetime of love, that only Mommy can give to them.

Today we have control of the Epilepsy.  Tomorrow, we may not.  I never know when it will hit them, when it will tease me with the risk of their lives being gone.  I never know when and I live in limbo as I wait for it to happen.

I cannot relate with the loss that Mother felt today as she said Goodbye one final time to the baby she spent her life loving. I pray daily I never feel her same pain.  I surely would not handle it nearly so well.

So with a pain-filled heart, I find myself loving my babies a little more, sneaking nighttime peaks when I’m able to ensure they are happy and safe and yes, still breathing.  I rejoice in the morning when they come to say “I love you, Momma”.  And I cherish every moment, every breath, every day that we have together here on Earth before we must part unexpectedly to that next place.

Another Seizure Update {Epilepsy Awareness}

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These days I feel like I am just floating through.  My mornings are filled with watching Laycie, making sure she sleeps long enough to keep the seizures away.  My afternoons are spent waiting and watching for Jackson next seizure.

We are stuck in limbo… waiting.  There is nothing to do to prevent them at this time.  There is no way to know what will happen next.

Because Jackson was on so many medications last month, he needs a brief detox before starting the next one: Phenobarbital.  He will start the new medicine this coming Friday but until then he will be on Klonopin while we give his body time to adjust from the last medicine.

This makes 6 medicines in less than a month that have been absorbed into my sweet boys bloodline.  I don’t even want to think about how this has effected him and pray that it really hasn’t.  I also pray that the Phenobarbital is the last drug for at least the next year for him.

I’m thankful that my sweet Laycie has remained controlled during this time though things are far from perfect with her.  She’s lethargic in comparison to her normal self.  She’s picky when eating.  She melts down mid afternoon.  But there are no seizures, save a few mild twitches through the night.

So this is where we are at.  God is surely holding me up, because I don’t know how I manage to make it through the seizure every few nights right now.  I’m afraid to leave the house for him seizing.  I’ll be so thrilled when we have control again.

Double Trouble with the Epilepsy Monster {Epilepsy Awareness}

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I come here and try to write but it’s hard to.  I can’t even describe what I’m feeling right now.  Exhaustion, fear, dread top the list.  It’s official.  The diagnoses of Epilepsy is now tagged to three of my four beautiful children.

Sunday night and early mornings are now time periods that I dread.  Jax’s seizure seem to happen on Sunday afternoons and Laycie’s upon waking in the mornings.  I find it so strange how even in a case of siblings, Epilepsy is so absolutely different.

I had just returned from the grocery store on Sunday afternoon and was putting the groceries away.  I had Emma in the living room playing with her brother.  I called her to come help put something away.  I can’t remember what at all now.  I remember telling her “Come help.  Jax is laying there playing and everyone is back and forth to keep an eye on him.”  I’m thankful I called her away and yet I question if I hadn’t would he still have seized or could it somehow have changed the dynamics of the episode?  My heart tells me it only would have traumatized my sweet girl.

Emma tells me it was like a dream.  She was looking at Jax and talking to him all the while heading to the pantry room.  She rounded the corner when she heard me cooing, “oh sweet baby, Jackson”.

I remember looking over at him doing his normal commando half crawl, roll, play with toys that he always does when he’s happy and content.  He was whining just a little.  Not a cry but more a complaint.  I figured he wanted someone to pick him up or wanted to know where big sister just ran off to.

I remember looking at him and seeing his eyes grow cold and empty.  I remember my heart stopping.

His grandmother was closest to him and I remember saying, “Momma, look at Jax… is he alright?”  We both began calling to him but he was slipping away into that unknown world that we cannot reach.  His little body tightened and bawled.  His breathing became labored.  He became so tight that he rolled from his side to his stomach on his own with the convulsion.

It was only a few seconds.  Then Grandma lifted him and in all his stiffness, he was just as limp and the life was slowly slipping out of him.  His breathing became more labored.  There was no cry.  It almost looked like he was choking and I remember commenting to her about that but I knew he wasn’t.  I know the difference by now.

I ran to call 911.  I started to dial on my cell and stopped.  I remember thinking what if it fails.  I grabbed the house phone and dialed.  I hung up.  I dialed again and hung up.  He wasn’t breathing.  By the time the ambulance got here he could be well gone.

I remember yelling for Jax’s Dad who had just fallen to sleep napping.  I remember the kids calling him.  He came immediately.  He looked at Jax.  He ran for the car along with Grandma.  I ran for my purse, knowing that my ID was needed as well as his medical information.

I remember looking at my babies and saying “I’m sorry we have to go with your brother.  Y’all know what to do.”

My sweet Emma.  My precious girl.  Who has been through this so many times herself.  My baby.  She was my rock at that moment.  She was my strength so much more than she will ever know.  She grew up in that instant.  At 10 1/2 years old, she looked at me and said “Just go, Mommy, we’ll be ok and we’ll take care of Laycie.  Just go and help Jackson.”  And I knew without a doubt she would do everything she could to care for her sister while I cared for the little piece of her heart that she calls her baby brother.

I grabbed my purse, told the kids to lock up behind me and ran out the door.  Josh was on the phone with his Grandmother letting her know the kids were at the house before we left our drive.  Thank God she lives only down that drive and was there to keep an eye on them.

He also called 911 to ask where the nearest ambulance was at.  There was not one available on the way but they requested her stop and pull over and they’d come to us.  He refused and told him we’d be there before they could even get to us and he wasn’t stopping until his son was in the ER.  

Grandma held him on the ride.  All this time he was seizing.  His sweet face was grey blue.  He was not responsive.  At one point I did hear him cry.  It was only a brief cry but then he went into another Gran Mal seizure.  Grandma had to do mild CPR to keep him breathing.

As we arrived at the ER, we ran inside.  No one was at the desk.  A security guard opened the ER door.  We didn’t wait for him, we ran past.  They were already waiting for him and immediately went to work taking blood and checking vitals.  It wasn’t long before he was coming out of this episode.

As he returned to normal, he had 3 absence episodes.  Finally, after a few hours, he took a nap and when he woke up he was normal again.  We were in the ER for 5 hours and I was just thankful to finally have solid proof that he wasn’t having Apnea spells as the neuro first thought.  There was finally solid proof that Jackson has Epilepsy, like so many in his family before him.

Last night I couldn’t sleep.  I was fearful of being awakened to find him seizing again.  I am still terrified he will repeat his last episode.  My sixth sense told me more was to come and it wasn’t off at all.

Laycie was sleeping in the bed with me as she has done almost nightly since her Gran Mal in June.  At 7:45 I awoke with a start for no apparent reason.  Laycie was still asleep.  Within minutes I knew why I’d woken up.

I watched her sleeping.  I watched her open her eyes.  Normally, she’d smile at me and tell me she was awake but not this morning.  Instead, she had that blank stare.  The same as the one Jackson had on the floor playing the night before.  She wasn’t looking at me but her eyes were open.  Her breathing labored.  Her mouth opened in an “O” and her tongue began to dart in and out.  Then she began to chew her tongue with her mouth opened.  I talked to her the whole time.  I remember saying, “Laycie, can you hear me?  Laycie, Laycie, can you hear Mommy”.

She couldn’t respond and by this point her mouth had closed and she was chewing her tongue still.  She was turning her head to me like she knew where I was and I was desperately trying to keep her head sideways so that her tongue did not obstruct her breathing.  Instinct told me if she lost her breath, this partial seizure may become a full blown Gran Mal.

The whole episode only lasted a minute, maybe two.  She doesn’t remember it at all.  I called Grandma to come over in case she had another while I got her medicine and gave it to her.  She didn’t but she did have an absence episode while she waited that lasted only a few seconds too.

Once her meds were in her, she acted ok.  Around naptime she had some other possible mild activity where her eyes were “odd” looking but I am not sure if it was seizure related or just her being a 5 year old.  It’s hard to tell the difference sometimes.

After Laycie’s episode this morning, we headed into the Peds office.  They evaluated both kids and found no cause for the episodes so they called into MUSC to schedule us and discuss treatment options.  I spent over two hours waiting for these things to be done only to come home and wait for them to call me.  Finally, at 3:30 pm I called them because I had not heard back.  Within minutes of talking with scheduling to make the appointments, I had a call from Laycie’s nuero’s nurse and then from her neuro herself as I was calling the nurse back.
Her neuro was the best as always and she is having us seen in office on Wednesday.  Hopefully, we will have some kind of answers then.  And hopefully we will start a med for Jackson.

When I had Emma, I never dreamed I’d have more kids with Epilepsy.  When she outgrew hers, I was thankful though I always worry it will rear it’s ugly head again.

When I had Laycie, I wasn’t expecting Epilepsy to be a part of her life.  I quickly learned I was wrong.  Now I wonder if she will ever outgrow it.

When Jackson was born, I was terrified he’d have this too.  When we made it past the 3-4 months that his sisters began seizing, I thought “Ok we made it past it”.  When he had his first episode three weeks ago, I thought “Ok here we go”.

Every day I wake and think “I have three kids with Epilepsy.  How will I handle having two kids with active seizures?”  Every day I’d like to live a normal life and ignore it’s existence or crawl into a hole until it goes away.  I know that won’t do my children any good though.

We are a medical exception and an extremely rare case.  It is not normal to have so many generations with Epilepsy or multiple siblings who have it.   It’s a genetic abnomality that we’ve yet to discover.  It’s my goal to find that gene, to help my children’s children, to learn as much as I can about our Epilepsy and our family and how it works for us so that our future generations can live as comfortably as possible with this disorder.

It’s my goal with this blog, to journal our experiences and share with others who are like us or who are new to this whole Epilepsy world.  I’ve lived with Epilepsy for 34 years now.  I’ve been an Epilepsy Momma for 10 years now.  It doesn’t get easier and it doesn’t go away.  It is there every single day, rearing it’s ugly freaking head and when you least expect it, the Epilepsy Monster strikes out.

This is our life, the rawness, the emotion, the truth of it all.  And I will spread awareness of this awful disorder until the day I return to being dust of the earth.

Tongue Swallowing in Seizures {Epilepsy Awareness}

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A common myth in Epilepsy is the belief that a person can swallow their tongue.  Once upon a time, it was advised that a person place a spoon into the mouth of a seizing person to prevent them from swallowing their tongue.  In recent years, Doctors have discovered that this is actually one of the worst things you can do for a seizure patient. 

FACT: A person CANNOT SWALLOW their TONGUE.  The little piece of skin underneath your tongue prevents it from being swallowed. 

FACT: Placing a spoon into a seizing persons mouth can be extremely dangerous.  It can gag the person.  It can become lodged in the persons throat.  It can be jabbed into the back of the mouth causing serious damage. 

FACT: The tongue can close over the opening in the throat preventing a person from breathing during a seizure.

The best way to prevent a person from having this happen is to roll them onto their side during a seizure.  This allows the tongue to fall forward and remain in a normal position preventing blockage to the throat, thereby preventing blockage of air during seizure.  It is also best to try to help a seizing person onto the ground away from sharp or hard objects to prevent further injury during a seizure episode. 

To learn more about seizures, and to become Seizure Smart please visit https://www.getseizuresmart.org/ today!!

Demonic Possession vs. Epilepsy {Epilepsy Awareness}

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Did you know there once was a time when Epilepsy was considered to be demonic?  During this time, people assumed that having seizures equaled being possessed by Satan or one of his many demons.  Churches tormented seizure patients by torturing them and putting through exorcisms to release this so-called demon possession that never even existed.  Almost 100 years ago, seizure patients were locked in insane asylums to be dealt with because so little was known about Epilepsy as a disorder.  Parent’s whose children had this disorder did not bother to deal with it but instead locked their child away at the doctor’s insistance. 

Today the outlook on Epilepsy has changed a lot.  People now know that Epilepsy is simply a neurological disorder which results in seizures.  Still, this demonic possession theory has been passed down by many and it’s our job as patients and parents to make sure the world knows that Epilepsy is not a curse from Satan but instead a disorder that can be treated with medication, among other things.  Children and Adults who suffer from this disorder do not need to be institutionalized as past generations believed but instead they need the support and love of family and friends to get them through.  They do not need people gawking at them in time of distress but instead need a helping hand and the caring assistance of others. 

To learn more about what to do to help someone who is having a seizure, please visit https://www.getseizuresmart.org/ and get seizure smart today!

What is Epilepsy? {Epilepsy Awareness}

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November is Epilepsy Awareness month.  Epilepsy is an inherited disorder passed through generations of our family.  As infants both of my daughters were diagnosed with this disorder.  It has completely changed our lives.

To find out more about Epilepsy you can visit Epilepsy.org.

This month Luv’N Lambert Life will showcase information about Epilepsy.  The only way to change how those who have this disorder are treated is to teach others and Epilepsy education is what this month is all about for us.

What is Epilepsy?
The Epilepsy Foundation describes it as “a medical condition that produces seizures affecting a variety of mental and physical functions. It’s also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy.

A seizure happens when a brief, strong surge of electrical activity affects part or all of the brain. One in 10 adults will have a seizure sometime during their life.

Seizures can last from a few seconds to a few minutes. They can have many symptoms, from convulsions and loss of consciousness to some that are not always recognized as seizures by the person experiencing them or by health care professionals: blank staring, lip smacking, or jerking movements of arms and legs.”  (taken from the Epilepsy Foundation: https://www.epilepsyfoundation.org/about/)

There is much more to Epilepsy but this is a very good description of the disorder.  Epilepsy comes in several forms that affect each person differently.  Sometimes more than one type of seizure can affect the brain.  We will discuss more about types of seizures later this month.

Get Seizure Smart at https://www.getseizuresmart.org/.