Monday, July 29, 2013

Double Trouble with the Epilepsy Monster {Epilepsy Awareness}


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 too.

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 Josh 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.

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